A Summary of the Proposed Research

Special Education Services 

Provided to students with Disabilities in a Tibetan Refugee Residential Rehabilitation Center in India: A Case Study

www.karunahome.org

First of all, I’m going to Karuna Home.
Karuna Home is a rehabilitation and residential
center for Tibetan refugees with disabilities in
Bylakuppe, India.
This field study will describe:
1. Services provided.
2. The residents’ characteristics and
disabilities.
3. Intended learning outcomes.
4. Curriculum and instruction.
5. Training of the staff.
6. Attitudes about disability within the cultural context.

Background, Significance, and Review of Literature

  •People are leaving Tibet—and many are coming to India—because of the “extremism of Chinese politics” including an excessive involvement in religion, culture, economy, etc. (Dhussa, 2009, p. 3).

  •McConnel (2011) reported a generally good working relationship, but also noted that “interactions between the GoI and the TGiE vary considerably across India, with relations generally being more cordial in Karnataka than in the Himalayan states” (p. 300).

  •Karuna Home is located in the state of Karnataka, and therefore is in an area where GoI is working well with TGiE. 

Special Education in India

• Every child has the right to education in India according to the country’s 86th Amendment of the Constitution (Banerjee, 2004).
• “…not more than 4 percent of children with disabilities have access to education” (NCER, 2005p. 8).
• Schools are usually private for people with disabilities.  They have some government funding sometimes.
• Inclusion is very new and access is given usually to only those with very mild disabilities. Successful special education occurred when private schools designed vocational curriculum and ran on the belief that individuals with disabilities can take an active role (Vakil, Welton, & Khanna, 2002).

Barriers to Special Education    

•Addlakha (2007) asserted: “Instead of giving rights to citizens with disabilities and empowering them, a culture of charity and welfare has been systematically promoted in India since the colonial period” (p. 111).

• Lack of Trained Personnel
• Doctors, teachers, other service providers
• Persons with Disabilities Act 1995
• No mandates/accountability like IDEA.  “Promote,” “Help,” “Encourage”
• Family Responsibility
• Negative Attitudes

Karuna Home

òBuilt in 2004.

òBylakuppe, Karnatakaà South India near Tibetan refugee settlements
òNo clear criteria on how Karuna accepts residents.

òAdministered by Geshe Lama Khube Rinpoche.
òGeshe Jangchup Phelgye and a team of dedicated Tibetans, both salaried and volunteers, fill the roles of teachers, caregivers, supervisors and cooks (http://www.karunahome.org/).

Individuals at the Center

• 26 individuals with disabilities, ages 11-30
• Dyslexia, cerebral palsy, visual impairment, autism spectrum disorder, psychomotor impairment, intellectual disabilities, physical disabilities, seizure disorders, etc.

www.karunahome.org

www.karunahome.org

Care at the Center

òDaily living assistance

òYoga instruction

òTraditional Tibetan oil massages

òPhysical therapy

òSpecial education

òExercise

òDaily Living, toilet training, self-care, health care, dental, gynecological, fitting for calipers

òSpeech therapy,music therapy,

òEnglish studies

òTailoring studies

òPrayer, chanting

Research Question
What are the policies, procedures, and staff attitudes toward disability in a residential
rehabilitation center for children of Tibetan refugee parents in India that provides special
education services for residents with disabilities?

References

This is it

This post has nothing to do with Michael Jackson.

I am very happy to have all of my items of business winding down.  Tomorrow is the day I defend my adult person prospectus to my committee.  I feel as prepared as I can, though I still do not feel prepared.  It will be such a thrill to have the meeting over, even if it means my prospectus is rejected.  I love to see things like this just, well, end.

A million thoughts rushed to my head last night about my impending doom with the prospectus.

1. Do I have a projector in the room I'll be presenting in?
2. How can I get the assent form completed for the application to the IRB?
3. Which references do I include in the IRB?
4. What the heck do I wear at a "defense?" I feel like I need a helmet and knee pads or something.
5. Where do the copies of my IRB go?

Getting Vaccinated

Well, this certainly has been a learning experience I will never forget.  In retrospect, I remember the feelings I had back in January of, "How. Will. I. Do. This?"  I felt so afraid about 90% of the time.  Teaching full time (and it's only my second year), while attending graduate classes and this field study prep course, not to mention writing a new literature review, TERRIFIED me.  I remember mapping out in my head how to allocate time for all of my routines and thinking, "Some of my crazy routines will have to die for this new class."  I wasn't prepared to commit to being at BYU every single day after work, and I really didn't want to make the commitment; I felt like I could not make the commitment--that it wasn't humanly possible.  I was seriously planning out time where I would be able to breathe thinking, "Crap, well I guess I can't breathe anymore on Tuesdays."  Okay well I did it.  Here I am, and it's over, and I did it. I know it's only the beginning in some ways, but I'm passed the beginning at least?  That's good. Back in January when I planned out times for me to shower, dress, brush teeth, and eat breakfast within the same 6 minutes, I actually had no idea what was ahead of me.  I grossly underestimated what would be required of me and what I'd be able to accomplish. I know I must attribute my strength, perseverance, and actually just plain miraculous events to "divine intervention," my students, my professors, and my family (thank you, Father & Mother Barnes and Dr. Barnes!).  I'm not as "big" as this final project implies, it's simply just miracles that carried me through this semester.  This sounds sort of like a speech for a big cause or something, or like my dying words, but honestly I thought I was going to die!

Here's the great news: I lived and I have the final product I thought impossible.  That's lucky and wonderful and I'm grateful for all of the support I've had and hope I'm able to produce more work that will benefit the people I love, the people that carry me through each sad and scary time.  I am truly determined to pay it forward, especially to my beautiful students, including the students in Bylakuppe.  I'm thrilled that I'll see them soon and learn from their examples.

I just feel lucky, and perhaps a little too proud.  I'm grateful.

And I hope the defense goes.  I don't even care if it goes well or bad, I just want it to "go."

Proposal Insights

Finally, my proposal is complete...for the most part.  I presented my proposal yesterday to classmates, and it was an informative experience.  It was another good practice run for my prospectus defense (scheduled for Monday!) in terms of knowing how to pace myself and read body language on which topics need clarification without having to ask questions.  It was also a unique experience to practice presenting my project and my specialty, special education, in an interdisciplinary way.  Since class a few weeks ago, I've been quite proactive about making my research more interdisciplinary because I want it to extend to many fields and be readable and interesting to different professionals.  I've come to the conclusion that being interdisciplinary=helping more people.

becoming interdisciplinary

The biggest feedback I received on my proposal presentation was that I need to make it more clear whether or not I will be implementing an intervention with the actual residents at the home.  This answer to this is: I will not.  I will simply be providing a thick description of the current situation at Karuna Home and participant observing to determine capability levels and instruction while volunteering at Karuna.  So this is something I need to adjust in my (a) presentation, (b) prospectus, (c) IRB application, and (d) ISP proposal.  Something I've found rather annoying through this process of being a graduate student with a prospectus and a student in an international study prep course is making sure all changes happen on all documents.  There are so many!

Overall, I'm happy to see the progress being made in my project.  I'm only getting closer to a real product, which is exciting.  I've spent all of my time researching literature and methods, and a little time was reserved for cultural research, but now I really get to dive deeper into the actual location I'm going to in more logistical ways.  Here's a better way of saying that sentence: it's time to pack.  I can picture the trip as something real now, which only adds motivation.  Before it was too overwhelming to seriously expect myself to write a prospectus, proposal, IRB app, fellowship app, and so on in addition to going to a foreign country and actually carrying out my plans.  Now that I've completed a lot of the big steps, I can face the bigger picture with more reasonable anxiety and excitement.
Proposal complete.

Culture Shock

In the reading for Monday's class, "Coping with Culture Shock" by Ferrarro, many insightful tips on dealing with culture shock were expounded upon.  Here are some interesting quotes from the reading:

• "Culture shock ranges from mild irritation to a deep-seated psychological panic or crisis" (p. 161).
• Reading this just made me instantly think, "I really want to avoid the latter."  I can see exactly how psychological panic can occur in a study abroad situation...and I want to avoid it.  It did, however, give me a sense of comfort that I'm not the only one known to have experienced psychological panic/crisis in stressful, and foreign in this case, situations.
• "[U.S. travelers] must struggle to uncover what is meaningful in this new cultural environment, while acknowledging that many of their own familiar cultural cues may be irrelevant" (p. 161).
• I'm so egocentric, I've found, as much as I don't want to be.  I'm not ethnocentric, though, it's mostly that I just have particular ways of doing random tasks throughout the day.  I have very rigid ways of completing menial tasks throughout the day and have trouble deviating from those methods, especially when I deem my methods more effective.  However, in an environment wherein I have no control, like on this field study, I better get used to learning other ways of doing things, and that my own cultural cues are not even inferior, but they're just irrelevant and obsolete in this situation.  I'm going to have to make changes and learn a new language in so many ways.
• Culture shock "results from a series of cumulative experiences" (p. 161).
• It's not just one sudden event.  It builds up over time and experience, and being retrospective is a good way to avoid a meltdown or a long stay in the "hostility" stage of culture shock.
• "The foreign ways of thinking and acting are no longer quaint and fascinating alternative ways of living but rather are pathological, clearly inferior to your own" (p. 162).
• This relates back to my egocentrism comments.
• When returning to the U.S., many travelers find that while abroad they had a tendency to "embellish (in some cases, grossly exaggerate) their fond memories of life in the United States" (p. 165).
• This is funny, and I haven't experienced this yet.  However, I've noticed other people come home having experienced this.  It's just another way we alter our reality to cope with a frightening situation.

South Asian Muslim Immigrant Religious Beliefs & Autism

Jegatheesan, B., Miller, P. J., & Fowler, S. A. (2010). Autism from a Religious Perspective: A Study of Parental Beliefs in South Asian Muslim Immigrant Families. Focus On Autism And Other Developmental Disabilities, 25(2), 98-109.

Islam views of disability. Like individuals of the LDS faith, Muslim parents have expressed a feeling of gratitude when responding to questions about having a child with a disability, autism specifically.  They believe that Allah, their god, sent the child with special abilities and needs to their family.  According to these parents, Allah selected them based on their “moral character, loving nature, and resilience; their ability to protect the child; and their fate or Karmic connection to the child” (Jegatheesan, Miller, & Fowler, 2010, p. 101).  The parents of the Muslim faith felt honored to be the parents of a child with special needs

prospectus defense

The pressure has really been on the past few weeks for me to submit my application to the IRB.  I've felt really uncomfortable about it, and so of course very nervous about running out of time for approval, as my application will go full board and require additional reviewing time.  When I'd sit and envision the weeks to come and a day where I defend my prospectus, I thought it impossible.  I have all these classes to attend, so much homework to catch up on,  a proposal to complete,  and three presentations to prepare for that will occur this week.  Oh and by the way I teach special education classes full time to individuals with severe disabilities.  In addition to this, my two aunts from Colorado and San Francisco showed up this week and I really wanted to see them while they were here.  I was feeling like I was just running through one deadline to the next, barely making it before tripping or running out of breath or something.  I'd just finished a graduate research fellowship application as well as a few other applications, my course contracts, and IRB draft.  Here's the main idea to this nonsense: I was bushed.

Somehow, though, (1) I've sort of prepared for the presentations to come, (2) my proposal got polished up and just about finished, (3) I saw my wonderful aunts during convenient times like when it was time to eat meals, and (4) miraculously I've scheduled my prospectus defense which will take place next week.  On Friday just before class I submitted my prospectus to all of my committee members.  I'm terrified about the actual defense, but also pleased as punch.  I sort of skipped myself around BYU on the way back home.  I have a little bounce in my step because things are moving forward.  

In the end, I'm really grateful this field study pushed me so hard early on to get solid drafts of my project in the form of a proposal.  I think it's a big reason I've been able to pull off other things with so many deadlines and pressures.  I had a good foundation for my prospectus, fellowship applications, and so on.

I'm tired.