8.10.12

Dissertation Draft Take 5- The Proposal Defense

Well folks, it's done.  That's right.  I proposed and I passed.  Like my good friend/ colleague/ mentor/ major professor told me, "you have another marriage to prepare for now- your dissertation!"

I must add, in my uncensored fashion, "it was really no big deal".  The actual defense that is, not the getting ready for it- now THAT was a big deal.  However, once it was time to defend the proposal, the one I spent what felt like half of my life writing and planning, man was I ready.  I nailed it and you will to!

Data collection already began.  I have two more rounds to go, both of which are scheduled.  I'm on track for my May 2013 graduate, just as planned.  Man it feels good when things flow.  But no celebration yet, I still have to do what I said I'd do in that "no big deal" proposal.

The real work has just begun and I LOVE real work. Really, I do.  It beats out what I deemed meaningless/unauthentic coursework (which, unfortunately for me and those around me, is what my PhD program of study was often filled with) ANYDAY!!!!

Happy Monday y'all.  I'm off to concurrent data analysis session 1- woohoo!!! (There's nothing like "real" data)!

Stayed tuned for updates on the trials and tribulations of my final days as PhD student- yikes!

TASH- Equity, Opportunity, and Inclusion for People with Disabilities



TASH is an organization that is near and dear to my heart.  My professional and moral journey began with TASH, and it continues there as well.  Often I am asked, "what is TASH" and I fumble for an answer because TASH is so much to so many people. 

Well.... here you go:                                        

Who We Are
Founded in 1975, TASH is a volunteer-driven, cross-disability advocacy organization of self-advocates, families, researchers, professionals, policy-makers, and others who work together to formulate solutions to tough barriers.  The inclusive practices we validate through research lead to inclusive, more tolerant communities.

Our Mission
To promote full inclusion and participation of children and adults with significant disabilities in every aspect of their community, and to eliminate social injustices that diminish human rights.

Vision
TASH envisions communities in which no one is segregated and everyone belongs – no matter what the perceived extent of disability might be.  TASH recognizes that people with disabilities want what everyone else wants – the dignity of work, the chance to “give back”, and loving friends and family.  We live this vision by advocating for:

Inclusive Education: evidence-based practices that benefit all students, with and without disabilities, and prepare them for adult living in a diverse and complex world.
Community Living: cost-effective practices which make it possible for people who need support to direct their own lives, live in homes and with people they choose, and contribute as citizens.
Employment: real jobs for real wages, and a chance to advance economically. 
Elimination of Disparities by Disability & Race:  improved quality of life for all people with disabilities, regardless of race/ethnicity.

How We Act on Our Mission
TASH’s core competencies are embedded in:
·      An uncompromising value framework that embraces a presumption of competence of all individuals and guides everything we do.
·      Expertise in evidence-based practices of integrated employment, inclusive education, person-centered community supports, and transitioning students to adult living.
·      State-of-the-art training opportunities for practitioners, employers, and families in the most advanced strategies for supporting citizens with significant disabilities to achieve optimal employment, socioeconomic outcomes, and community inclusion.
·      Unwavering commitment to challenge inaccurate misperceptions about citizens with significant disabilities and transform the “status-quo” through innovation and outcomes-based strategies in workforce development, community inclusion and public policy.
·      Widely respected publications, including a scientific journal, a magazine for parents and practitioners, and excellent technical assistance materials.

We Will Realize Our Vision When –
All individuals with disabilities enjoy a quality of life similar to those available to all citizens. This means all people with disabilities must:
·      Be presumed to be competent to direct their own lives;
·      Have a way to communicate;
·      Are fully included in their neighborhood schools;
·      Have protections against abuse, neglect, and aversive procedures;
·      Have the tools and opportunities to advocate on their own behalf;
·      Have a home, recreation, learning, and employment opportunities based on the their personal vision of quality of life;
·      Have individualized supports that accommodate their functional needs.

Equity, Opportunity, and Inclusion for People with Disabilities
ED NILES, Lincoln, Maine

Ed Niles was 35 years old when he began telling people he wanted an “apartment building.” People at Ed’s support agency, Katahdin Friends, Inc. (KFI), had been TASH members for a number of years and were inspired by leaders in supported living to rethink how and where people with developmental disabilities could live. Many of Ed’s friends were moving out of foster care homes and into their own apartments with support from KFI. Ed wanted this same opportunity, but apparently he wanted an entire building!

Ed had lived with his family until age 7 when he was sent to live at Pineland Training Center, Maine’s former institution for people with intellectual disabilities. Ed lived in foster homes for 17 years, but when Ed began working at the local McDonald’s, which provided job supports, it was the beginning of new expectations! Ed’s parents never thought he would be able to hold a competitive job -- but he had, and they were so proud. They began to view Ed in a different light. If he could do this, then maybe he could do other things…

In Fall 1997, through Ed’s persistence and KFI’s gentle advocacy, his family finally agreed to him renting a place with a roommate—better, but not ideal. Ed revealed the effect of his restricted former foster life by standing at his bedroom door until someone gave him “permission” to come into the rest of the house. It took months for Ed to realize that this was his home and that he could go wherever he wanted.

But once Ed got comfortable, he was delighted in showing visitors every part of his home, highlighting his appliances, yard, cellar and other interests. It was the first time that this man in his 40s had possessed anything and controlled his life.

Ed continued to demonstrate his desire to live alone. Following TASH’s values of honoring personal choice, KFI rearranged its resources to support Ed’s desire to move into his own apartment without a roommate. The contrast in Ed’s life is remarkable. For 17 years, he was institutionalized. Once in his own apartment, Ed began participating in his community as a worker, neighbor and friend.

Ed’s life continues to blossom. He became a homeowner on December 20, 2005. He loves his new house in Lincoln, Maine. Ed retired from McDonald’s after 15 years of employment. He volunteers at a local food cupboard, attends music jams, plays bingo and has been attending the same church for over 18 years. And he developed a new connection—the gentleman who mows his lawn regularly stops in to have coffee or a soda.

If you were to ask Ed about his life today, he would say, “I am happy, I am the boss, and it is my right.”
                                       
Equity, Opportunity, and Inclusion for People with Disabilities
TOBY BAZAN, Canyon County, California

When Toby Bazan was a child, he had some issues at school and in the community. When he was 15 years old, he had a run-in with the police and he ended up in a locked residential unit in California’s Fairview State Hospital, where he lived for 13 years. Much of Toby’s time was spent locked down in a unit, but sometimes he got to go outside and walk around campus thanks to the hospital’s day program. He even had the opportunity to have bonfires on the beach, which Toby looked forward to very much.

Unfortunately, Toby was still living in an institution. The pushy and controlling staff and tight, crowded nature of the hospital made Toby very nervous. If Toby got agitated, sometimes the staff would tie him down in 5-point restraints. Not only does this increase the chances of a patient getting injured, but this also made Toby much more anxious. One time, Toby was invited to speak at a function, but once Fairview found out he was going to talk about the staff tieing him down in 5-point restraints, the hospital would not allow him to go. Toby knew that the hospital was being dishonest and it was wrong for them to try to hide what was going on inside the facility.

A particulary upsetting experience was the case of Van Ingraham. Van was a patient at Fairview and a friend of Toby’s. Van died of a broken neck while under the care of the staff at the hospital. The hospital said that Van fell out of bed. The coronor’s report came to the conclusion that Van’s injuries could not have been caused by a fall out of bed; Spinal experts say that the injury was likely a homicide caused by a headlock.

Luckily for Toby, he moved out of Fairview in 2007 and into his own apartment. Giving Toby the freedom to live on his own allowed him the chance to figure out what makes him comfortable on a day-to-day basis. Being independent isn’t all great. Life has its ups and downs for everyone, Toby is no exception. But Toby seems to be flourishing greatly.Toby now leads a fulfilling life. He has presented his experiences at colleges and conferences around the country. He has a great relatioship with his local politicians and service agencies.

During the Holidays, Toby works as a Bell Ringer for The Salvation Army, and now he’s working on turning his love of beautifying his community into a recycling microbusiness.

Equity, Opportunity, and Inclusion for People with Disabilities
DANNY LEDERER, Louisville, Kentucky

Like most parents, Leslie Lederer did not expect to have a child with a disability. Danny seemed fine at birth. Soon they noticed that he wasn’t achieving the developmental milestones at a typical pace. At age 6 months, Danny was diagnosed with Infantile Spasms. Little did she know that Danny would have significant intellectual and developmental disabilities.

Armed with a medical diagnosis, Danny’s parents began trying to fix Danny through medication and therapy. Fortunately, one of the medications stopped Danny’s seizures; it also resulted in the loss of most of the motor skills Danny possessed at the time. Danny attended an early intervention program with other kids who had complex disabilities. Over time, they noticed that Danny was more interactive around other kids. One day, another mother said that her son considered Danny his best friend.

When Danny was ready for kindergarten, the school wanted to place him in “the severe and profound classroom.” Danny’s parents insisted he enroll in a class comprised of kids with and without disabilities. About that time, Leslie read a magazine from TASH, which highlighted how students with severe disabilities like Danny’s were being integrated into schools. Leslie attended the TASH Conference and started educating school staff about what she had learned.  

As a result of the TASH connection, Danny moved back to his neighborhood school in fourth grade over the loud objections of the principal. However, the law said Danny had the right, and people in the district supported them. He was able to finish elementary school with his sister, cousin and friends—old and new.

Danny continued on to middle school and then high school. He went to proms, was on homecoming court and the newspaper staff, and graduated with his class in 2002. The principals were welcoming and many of the regular and special education teachers were great at figuring out how he could work on his goals and participate in the general curriculum. From the beginning, he was part of the school and larger community. He made friends, got invited to parties, played Little League ball with the help of classmates. The next step was for Danny to transition to the community. Using many of the strategies learned at TASH, Danny did volunteer work and spent time in class and working on a college campus.

Danny has never learned to hold his head up, reach and grasp, feed himself or use a switch consistently despite the best efforts of his support staff. What he has learned is to be part of the community, a place where his health and well-being are immeasurably benefited. The family realized early on that they were raising a future community member and to the best of everyone’s abilities, and his, they have.

Equity, Opportunity, and Inclusion for People with Disabilities

Barb Trader, Executive Director

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Donations and Inquiries
1001 Connecticut Ave NW Suite 235
Washington, DC 20036
Main Info Line: 202-540-9020