Wednesday, January 26, 2011

Help train doctors of today and tomorrow

In a recent article by Dr. Brian Skotko, entitled “ Understanding the implications of prenatal testing for Down syndrome “, he calls on the medical community to, “ Train not only the doctors of today but the doctors of tomorrow. Medical students, nurses and genetic counselors should be educated beyond the textbook and have interactions with people who have Down syndrome so that they may better understand the realities of living with the disorder. “

As we all know, it takes time to build trust and relationships. At Down Syndrome Indiana, we strive to be the local resource for families and medical professionals to contact whenever they have a question about Down syndrome or are looking for resources and support. We will continue to build positive relationships with medical professionals so they can see just how valuable the lives of individuals with Down syndrome are to the community.

You can help medical personnel by assisting local doctor Katie Weber with the project below:

Dear DSI Self-Advocate and Family:

I am writing this letter to ask you to help with a project I have
started. The project is to teach doctors how to take better care of
their patients with intellectual disabilities. I believe that
self-advocates and their families are some of the best teachers. I
would love to have the best help possible!

One of the ways I would like to teach the doctors is by having them
practice in a classroom that looks like a doctor’s office. In this
classroom, actors pretend to be patients so the doctors can practice
their doctor skills. I am asking if you would like to be an actor in
this classroom. It will mean coming to the classroom at least twice.
The first time will be practice for you. You will see what the
classroom is like. You will learn how to act like a patient in the
classroom. We will practice the kinds of questions the doctors will
ask and how you should answer them. We can have extra practice for
you if we decide this is needed. The second time will be practice for
the doctors. This time, you will spend 2 hours acting as a patient
for 4 different groups of doctors. They will ask you questions and
you will answer like we practiced. After each group of doctors, you
will have the chance to tell them how they did. I would like you to
tell the doctors if you could understand them and if they listened
well to you.

The date for the second session is 2-4pm on Wednesday, May 25th, 2011.
There will be a day (or more) to work with me to learn your part
before May 25th. I will hire and pay each of the actors for their
time and help. If you think you would like to be an actor for this,
please email me (kamweber@iupui.edu) or call the Center for Youth and
Adults with Conditions of Childhood (CYACC) at Riley Hospital at
317-948-0060. Please also let me know if you have questions to help
you decide if you would like to be an actor.

Sincerely,



Katie Weber, MD

Associate Professor of Clinic Medicine and Clinical Pediatrics

Indiana University School of Medicine

Center for Youth and Adults with Conditions of Childhood (CYACC)


Thank you for your help in training the doctors of today and tomorrow,




Lisa Tokarz-Gutierrez, Executive Director

Good Food, Good Times, Good Employment Practices: O’Charley’s

Meet Marty Mason, a Self Advocate that volunteers for Down Syndrome Indiana and is employed by O’Charley’s in Fishers, Indiana. I recently visited him and his manager to find out more about what Marty does there.

When I arrived at O’Charley’s, I found Marty working diligently at one of the booths in the restaurant. I asked him what he does and he explained that after he clocks in, he rolls the silverware, “1 knife, 2 forks” inside the napkins. He also polishes the silverware before he rolls it. He alternates between two stations doing both jobs on Monday and Friday mornings.
Next, I spoke with the General Manager of the restaurant, Jay Eicher. I asked him how he chose to hire Marty. He explained that originally he had worked with Noble to hire Marty. However, when Marty was no longer receiving support for employment services through Noble, O’Charley’s made the decision to retain Marty, where he has been employed for approximately two years. I then asked for some input on what it is like to work with Marty and the answers Jay gave are similar to what other employers say about working with individuals that have a disability. Jay said, “Marty has never missed a day of work unless there was a family function and it was pre-arranged”. He went on to say that Marty is very, “reliable”, “does a great job” and is, “a pleasure to have in the building”.

Jay expressed his gratitude for the, “huge effort put forth by the family” and their loyalty to O’Charley’s. They celebrate birthdays and special occasions there to show their support for including Marty in the O’Charley’s family.

Down Syndrome Indiana believes that individuals with Down syndrome are valuable employees who bring needed skills and talents to the workplace. Yet the unemployment rate for individuals with intellectual disabilities remains embarrassingly high. It is estimated that only 22% of individuals with developmental or intellectual disabilities are employed.
Please encourage local employers like Jay Eicher and O’Charley’s to employ individuals with Down syndrome. You can send a thank you letter to Jay at:

O’Charley’s
c/o Jay Eicher, General Manager
11655 Fishers Corner Blvd.
Fishers, IN 46038

Before leaving, I asked Marty, “Do you love your job? He said, “YES! And today is payday!”. It was my payday too so I completely understood the enthusiasm.

Friday, January 14, 2011

An informational alert prepared by Fifth Freedom
Information courtesy of the Governor's Council for People with Disabilities

Help shape Indiana's Disability Policy by completing the 2011 Disability Poll
The following is a message from the Indiana Governor's Council for people with Disabilities:

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Help Shape Indiana's Disability Policy! Have you responded yet to this year's Disability Poll? If not, it's time to add your voice!

The Governor's Council for People with Disabilities, Indiana Protection & Advocacy Services, and the Indiana Institute on Disability & Community invite you to participate in the 2011 Disability Poll. This year, the focus is on what should be Indiana's policy priorities for people with disabilities.

To respond, simply go to this website: http://www.thepollingplace.org . If clicking the link does not work, copy and paste the link into your browser's address bar. If you answered the survey at the Governor's Disability Conference this past December, there's no need for you to do it again.

The survey is also available in alternative formats. Call: 812-855-6508, Toll-free: 800-825-4733, or TTY: 812-855-9630. You may also email cpps@indiana.edu to request an alternative format.

The Disability Poll is conducted annually by the Institute's Center on Planning and Policy Studies, under the direction of Dr. Vicki Pappas. This is a joint project of the DD Network in Indiana: the Institute, the Governor's Council for People with Disabilities, and Indiana Protection and Advocacy Services.


Christine Dahlberg, Deputy Director
Governors Council for People with Disabilities
402 W Washington St, Rm E-145
317-232-7774
cdahlberg@gpcpd.org

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Saturday, January 8, 2011

CYACC Project

Dear DSI Self-Advocate and Family:

I am writing this letter to ask you to help with a project I have started. The project is to teach doctors how to take better care of their patients with intellectual disabilities. I believe that self-advocates and their families are some of the best teachers. I would love to have the best help possible!

One of the ways I would like to teach the doctors is by having them practice in a classroom that looks like a doctor’s office. In this classroom, actors pretend to be patients so the doctors can practice their doctor skills. I am asking if you would like to be an actor in this classroom. It will mean coming to the classroom at least twice. The first time will be practice for you. You will see what the classroom is like. You will learn how to act like a patient in the classroom. We will practice the kinds of questions the doctors will ask and how you should answer them. We can have extra practice for you if we decide this is needed. The second time will be practice for the doctors. This time, you will spend 2 hours acting as a patient for 4 different groups of doctors. They will ask you questions and you will answer like we practiced. After each group of doctors, you will have the chance to tell them how they did. I would like you to tell the doctors if you could understand them and if they listened well to you.

The date for the second session is 2-4pm on Wednesday, May 25th, 2011. There will be a day (or more) to work with me to learn your part before May 25th. I will hire and pay each of the actors for their time and help. If you think you would like to be an actor for this, please email me (kamweber@iupui.edu) or call the Center for Youth and Adults with Conditions of Childhood (CYACC) at Riley Hospital at 317-948-0060. Please also let me know if you have questions to help you decide if you would like to be an actor.

Sincerely,



Katie Weber, MD
Associate Professor of Clinic Medicine and Clinical Pediatrics
Indiana University School of Medicine
Center for Youth and Adults with Conditions of Childhood (CYACC)