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Culture and Identity

• 
  Jonathan K
  Self-Advocate

I am a Chinese American since I was born in New York City. My mom is from Hong Kong and my dad is from China. I have two younger siblings: Elizabeth and Lew. English is spoken throughout my household due to the fact that my mom learned English since she was born in Hong Kong and that my dad moved to America when he was very young. The reason why I don’t speak any Chinese is because my parents never spoke it. I also have a Chinese American friend named Ryan who, just like me, doesn’t speak Chinese. Many of my cousins don’t speak Chinese either.

I live in a very tough family. My parents are hardly understanding of my disability (Asperger’s syndrome). What’s worse is that they demand a lot of me. My theory on my tough parents is that the Chinese can be very harsh in criticizing their own culture, government and society. Plus, I feel my parents give me severe scolding a lot. My mom understands my disability more than my dad.

I consider myself unique since I have Asperger’s. Asperger's syndrome is an autism spectrum disorder that is characterized by significant difficulties in social interaction, along with restricted and repetitive patterns of behavior and interests. Having Asperger’s means that I have certain talents and certain difficulties. I have a very good memory for the subjects and topics that spark my interest. One of my strong points and interests is geography and other countries and cultures of the world. I am often able to help my mom and my brother out when they have questions on geography and other countries. But I have trouble being around other people. I may also have difficulty with some things most people don’t have trouble with. Thanks to my mom, I went to a special needs school called The Child School/Legacy High School.

Despite the fact that I live in a tough family, I sometimes feel lucky to have a family like the one I have now. After all, I try to make the best out of everyone and everything. Sometimes I believe it’s my name that affects my life – and makes me different from my mom and dad – and which explains why I’m so mild tempered. 

Tom Rosenberg asks in his book “Changing My Name After Sixty Year,” what’s in a name? How does one’s name affect his or her life? I decided to look up the meaning of my name since the book had a major impact on me. The definition of my name meant gift of God. I was so surprised to learn that I had such a wonderful name. Then I reflected back to when I met certain people who thought I was a wonderful, sweet person. I was having a feeling that a person’s name and the meaning of it can affect his or her lifestyle and personality. The way a person’s name sounds or is pronounced can also affect his or her personality.

When I entered The Child School/Legacy High School, my teachers and peers gave me the nickname Johnny. Sometimes they called me Johnny and my last name.

I remember when I first met my personal psychologist. The second I was done with my very first appointment, she told my mom that she thought I was very sweet.  I told the doctor that my dad is very critical of me. She believes the things my dad says about me are not true. My former principal thinks I’m a wonderful person, even if she sometimes yelled at me before. Even when she reprimanded me, I always knew she meant well. Sometimes I told the principal about how critical my dad was of me. After she listened to my side of the story, she explained that my dad came from a culture where he did not experience freedom, and as a result expressed emotions differently. This was his way showing me that he loved me. She also told me I was a wonderful person, no matter what my father or anyone else said. She suggested I just throw it out the window and not let it get to me. I tried to follow her advice and make the best out of all the freedom I have. Both women helped me to understand that even if I have a disability, I am wonderful in my own way. 

I sometimes try to understand that both my parents lived tough lives and went through difficult childhoods. Both my parents grew up in small apartments in Manhattan. They also worked constantly. My mom stated that she hardly ever watched TV when she was little because she was always in school, taking classes. Since both my parents originated in different parts of China, I feel that’s another reason why they’re very different in terms of personality. 

Since I’m Chinese, studying is a major focus in my home. My parents make me study a lot. I see my mom studying with my brother and watching over him all the time. Sometimes, even though I’m a college student now, I study with my mom. Due to constant studying, I often get good grades in school. Lots of people think I’m a good student. I feel good getting good grades in school.  Sometimes I do little or no studying at all, and I still get good grades on tests.

Chinese parents also want their children to be as productive as possible which is the reason why my dad harps on me a lot about my education and what I’m learning in school. My dad wants me to get my Liberal Arts degree at Queensborough Community College so that I can become a tour guide.

There are times when I feel lucky to live in this family. My therapist believes that my mom does a lot for me. My sister thinks that my mom is very tolerant of my behavior. Sometimes I feel that my mom does a lot for me to prove that she is looking out for my best interests. In return, I help my mom out with the housework, like the chores and cooking. My mom tells others that I am very helpful around the house. I help out with the laundry, mopping, vacuuming, and even washing the cars.

I feel good being a nice person and doing nice things for others.

First article

Tags: Autism; Advocacy; Education; Family Support; Person Centered

Measuring Success of Services

• 
  Jonathan Walters
  Executive Editor GOVERNING.com

The importance of performance measurement in tough fiscal times can't be overstated, but I also don't think there's any more important policy area to which it applies than human services.

Recently, I spoke at a conference for the National Association of State Directors of Developmental Disabilities Services (NASDDDS) on the fiscal outlook for 2013. Joining me was Bill Pound, executive director of the National Conference of State Legislatures. Both of us predicted that Congress would ultimately cobble together some unsatisfying, short-term gimmick for avoiding the so-called "fiscal cliff," and we both suggested that whether we went off the cliff or not, folks in human services -- including those focused on developmental disabilities -- were going to continue experiencing the big fiscal squeeze. I went on to suggest that anyone not focusing more tightly on results-informed budgeting and policy would wind up in even worse shape.

That's where the National Core Indicators (NCI) project, which tracks outcomes for those with developmental disabilities, comes in. It's a joint venture between NASDDDS and the Human Services Research Institute, an analytics group based in Cambridge, Mass. It turns out that the NASDDDS has been beating the results-informed budeting drum since the late 1990s. "It started around the time states began flirting with managed care," says Charles Moseley, associate executive director of NASDDDS. "And we were also starting to hear from other directors that they were getting a different kind of question from legislators during budget hearings. They didn't want to hear about outputs -- how many clients we were serving -- they wanted to know what difference we were making in these folks' lives."

The NCI effort grew slowly, partly due to cost (in particular, the NCI involves some pretty extensive interviewing of clients), and partly due to all the difficulties inherent in pushing results-informed government, from trying to convince public employees of the value of performance measurement to battling long-time outside constituencies invested in the status quo.

But the project gradually gained traction, and was recently given a nice boost by the U.S. Department of Health and Human Services' Administration on Intellectual and Developmental Disabilities, which has put up money to help states join the consortium, bringing the current total involved in the NCI project to 35. Today, the NCI covers everything from whether individuals with development disabilities have jobs to the extent to which clients feel services for them are accessible and well coordinated to life outcomes, such as regular exercise.

But as any veteran of public-sector performance measurement regimens knows, having measures and data is not the same as making spending and policy decisions based on those measures and data.

Stephen Hall, commissioner of Kentucky's Department for Behavioral Health, Developmental and Intellectual Disabilities, says that when he arrived on the job three years ago, the state was collecting data under the NCI project, but that's as far as it went. "And so we started benchmarking against other states who were performing better in key areas of NCI," says Hall.

Among the significant changes that the state has made based on that exercise: A 180-degree shift away from sheltered workshops to supported employment based on clear evidence that clients who have actual jobs report far better life outcomes than those who are simply being shuttled to and from workshops. Those with jobs reported key improvements in measures like healthier relationships, less loneliness and even less obesity, not to mention such other incidentals as higher incomes. "This used to be couched in terms of a philosophical difference," says Hall, "but it's not a philosophical difference; it's a real difference in outcomes."

Of course providers with a strong interest in maintaining the status quo weren't thrilled with the new evidence-based approach, says Hall. "The point is there are always people who benefit and gain if things stay the way they are, so you'd better have your act together if you want to make change."

Two very important constituencies proved to be valuable allies in making that change: lawmakers and clients' families. "Having real data was impressive to legislators," says Hall. But most critical was winning over families. "I said to them, 'Look, at the end of the day it's your choice. But I'll do whatever I can to talk you into better outcomes for your [family members].'"

NOTE: You can also view Jonathan's post in full at  http://www.governing.com/topics/health-human-services/col-measuring-developmental-disabilities-services-success.html

First article

Tags: Autism; Day Services; Early Intervention; Education; Employment; Family Support; Health Care; Residential; Transition

Young Adults with Autism Seeking White-Collar Careers for First Time

• 
  Lynn U. Berman
  Senior Manager, Media Relations

I'd like to take this opportunity to wish everyone a happy, healthy and peaceful holiday season. Much has been going on at YAI and I think you will like the direction our organization is headed with its new mission of Living, Loving and Working. The people YAI and thousands of other agencies across the country support every day are really not that different from any of us. They want to live in a nice home, enjoy good friendships and relationships and have a good job.

With that in mind, I thought I'd share Huffington Post's Christina Wilkie's article on young adults with autism seeking white-collar jobs for the first time. Hope you'll weigh in on this. Looking forward to sharing other voices in the coming year.

First article

Tags: Autism; Employment; Person Centered; Transition