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
Wednesday, January 26, 2011
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.
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:
-----
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
-----
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:
-----
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
-----
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)
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)
Friday, December 17, 2010
7 Reasons to Support DSI this season
This is an exciting time for the Down syndrome community in Indiana, and we are inviting you to be a part of it! Listed below are some of our favorite reasons to support DSI. I hope you agree and choose your favorite to financially support this holiday season as well.
SEVEN Reasons to Support to DSI:
1. Individuals with Down syndrome get the chance to go to college. Just like you or I, individuals with Down syndrome desire to be included in their community and to attend college. Thanks to the hard work of the Indiana Postsecondary Education Coalition, this is now possible in Indiana! Down Syndrome Indiana will create a website specifically on postsecondary education in Indiana for individuals with an intellectual disability and host a conference to show Indiana colleges what a successful program looks like and how truly inspiring it is! Click here for more information on this topic.
2. People with Down syndrome are beautiful.Join Down Syndrome Indiana as we partner with Midwest Fashion Week for a week of fashion-related events from March 12th to March 19th to show the entire Midwest how beautiful it is to live in an inclusive community. During this week, rising stars will shine, fashion will have a purpose, and we are definitely going to show off our designer genes! Click here for more information.
3. Approximately 1 out of every 733 babies is born with Down syndrome, making it the most common genetic condition.These parents don’t need you to feel sorry for them! They need resources and support as they raise their beautiful child just as any new parent would! Down Syndrome Indiana provides New Parent Packets that contain indispensible local resources for families that love a child with Down syndrome. Click here for more information.
4. Students with Down syndrome get a better education thanks to advocacy.Down syndrome Indiana provides Educator Toolkits free of charge! This is a rich resource full of books that encourage classroom inclusion and the better education of students with Down syndrome. Click here for more information.
5. The attitude of the father becomes the attitude of the family.Dads Appreciating Down Syndrome (D.A.D.S.) exists to assist and support, through fellowship and action, the fathers and families of individuals with Down syndrome. Fathers are challenged to be a better and more involved father and husband, as well as a stronger advocate for his child with Down syndrome. Click here for more information.
6. Down Syndrome Indiana walks the talk.The Buddy Walk® was developed by the National Down Syndrome Society in 1995 to bring together a wide range of concerned individuals to reach out to friends, family, and co-workers to promote awareness and inclusion for people with Down syndrome and to raise funds for education, research, and advocacy programs. The 2011 walk will be held on Saturday, October 8, 2011 at Celebration Plaza in White River State Park, and we want 5,000 participants! Click here for more details.
7. The entire family benefits when parents are involved in programs of support and resource enrichment.Down syndrome Indiana offers a variety of parent support groups across Central Indiana whose purpose is to help strengthen families that love a child with Down syndrome! Click here for more information.
Thank you for taking the time to read this letter and to dream of a better life for individuals with Down syndrome. Please click here to support Down Syndrome Indiana’s mission.
Dedicated to enhancing the lives of individuals with Down syndrome
Dr. Schreiner, 2011 Board Chair Lisa Tokarz-Gutierrez, Executive Director
P.S. The above seven options are just a sample of the many valuable programs available through Down syndrome Indiana that support and enhance the lives of individuals with Down syndrome. For more information on these or any of our programs, please visit www.dsindiana.org. Also, please do not hesitate to contact Lisa at lisa@dsindiana.org or call the office at (317) 925-7617.
SEVEN Reasons to Support to DSI:
1. Individuals with Down syndrome get the chance to go to college. Just like you or I, individuals with Down syndrome desire to be included in their community and to attend college. Thanks to the hard work of the Indiana Postsecondary Education Coalition, this is now possible in Indiana! Down Syndrome Indiana will create a website specifically on postsecondary education in Indiana for individuals with an intellectual disability and host a conference to show Indiana colleges what a successful program looks like and how truly inspiring it is! Click here for more information on this topic.
2. People with Down syndrome are beautiful.Join Down Syndrome Indiana as we partner with Midwest Fashion Week for a week of fashion-related events from March 12th to March 19th to show the entire Midwest how beautiful it is to live in an inclusive community. During this week, rising stars will shine, fashion will have a purpose, and we are definitely going to show off our designer genes! Click here for more information.
3. Approximately 1 out of every 733 babies is born with Down syndrome, making it the most common genetic condition.These parents don’t need you to feel sorry for them! They need resources and support as they raise their beautiful child just as any new parent would! Down Syndrome Indiana provides New Parent Packets that contain indispensible local resources for families that love a child with Down syndrome. Click here for more information.
4. Students with Down syndrome get a better education thanks to advocacy.Down syndrome Indiana provides Educator Toolkits free of charge! This is a rich resource full of books that encourage classroom inclusion and the better education of students with Down syndrome. Click here for more information.
5. The attitude of the father becomes the attitude of the family.Dads Appreciating Down Syndrome (D.A.D.S.) exists to assist and support, through fellowship and action, the fathers and families of individuals with Down syndrome. Fathers are challenged to be a better and more involved father and husband, as well as a stronger advocate for his child with Down syndrome. Click here for more information.
6. Down Syndrome Indiana walks the talk.The Buddy Walk® was developed by the National Down Syndrome Society in 1995 to bring together a wide range of concerned individuals to reach out to friends, family, and co-workers to promote awareness and inclusion for people with Down syndrome and to raise funds for education, research, and advocacy programs. The 2011 walk will be held on Saturday, October 8, 2011 at Celebration Plaza in White River State Park, and we want 5,000 participants! Click here for more details.
7. The entire family benefits when parents are involved in programs of support and resource enrichment.Down syndrome Indiana offers a variety of parent support groups across Central Indiana whose purpose is to help strengthen families that love a child with Down syndrome! Click here for more information.
Thank you for taking the time to read this letter and to dream of a better life for individuals with Down syndrome. Please click here to support Down Syndrome Indiana’s mission.
Dedicated to enhancing the lives of individuals with Down syndrome
Dr. Schreiner, 2011 Board Chair Lisa Tokarz-Gutierrez, Executive Director
P.S. The above seven options are just a sample of the many valuable programs available through Down syndrome Indiana that support and enhance the lives of individuals with Down syndrome. For more information on these or any of our programs, please visit www.dsindiana.org. Also, please do not hesitate to contact Lisa at lisa@dsindiana.org or call the office at (317) 925-7617.
Child Care Answers
Down Syndrome Indiana often gets questions about finding quality childcare for your child with Down syndrome and their siblings. I would like to introduce you to a resource that you may use to assist your search for quality childcare. It is called, Child Care Answers. Child Care Answers provides:
· Individualized referrals to family child care homes, centers, ministries, pre-schools,
before/after school and summer programs.
· Enhanced services for families with children who have special needs, including the
availability of an inclusion specialist on staff.
· Information on Indiana laws and regulations relating to child care.
· Education on how to choose a quality child care and early education program.
· A quality rating system called Paths to Quality to help you find the best fit.
· Bi-lingual staff.
Child Care Answers serves the following counties:
Hamilton
Hendricks
Johnson
Marion
Information and applications for financial assistance with child care are available but I was advised that there is about a 9 month waiting list.
For more information, you can contact Child Care Answers at 317-631-4643 or you can visit their website at www.childcareanswers.com
· Individualized referrals to family child care homes, centers, ministries, pre-schools,
before/after school and summer programs.
· Enhanced services for families with children who have special needs, including the
availability of an inclusion specialist on staff.
· Information on Indiana laws and regulations relating to child care.
· Education on how to choose a quality child care and early education program.
· A quality rating system called Paths to Quality to help you find the best fit.
· Bi-lingual staff.
Child Care Answers serves the following counties:
Hamilton
Hendricks
Johnson
Marion
Information and applications for financial assistance with child care are available but I was advised that there is about a 9 month waiting list.
For more information, you can contact Child Care Answers at 317-631-4643 or you can visit their website at www.childcareanswers.com
Saturday, December 11, 2010
Down Syndrome Indiana Stars
On December 5th, Down Syndrome Indiana hosted its annual Holiday Party and Star Awards. I would like to introduce you to our winners:
Meet Ann Gibson:
Ann has been a wonderful board member and officer of DSI for many years. Early in Ann's service on the board the Buddy Walk(R) was without a leader and Ann stepped up and took charge, resulting in a very well organized and successful Buddy Walk(R). At a board meeting after that walk, Ann said that chairing the Buddy Walk(R) committee was one of the most rewarding things she had done. And, Ann has done all this service for children with Down syndrome and their families even though she does not have a family member with Down syndrome. When she agreed to serve on the board, she said that she wanted to do something to help others and she saw Down Syndrome Indiana as an organization in which she could fulfill that need. People with Down syndrome, their families and our community have benefited so much from Ann's commitment. Thank you Ann!
Meet Katie Shaw:
Katie is a remarkable individual with a drive for excellence! For Katie, no job is left undone. Whether it is filing paperwork, lifting heavy boxes, visiting donors, assisting staff, etc. Katie is one of the most dependable and reliable volunteers that we have here at DSI. She is an inspiration to all of us! Thank goodness for volunteers like Katie!
Meet Kate von Eiff:
Brian von Eiff, Kate's son, dreamed of going to college like his Best Buddy, Brad, but there were no programs in Indiana for Brian to attend. Brian's mom, Kate, didn't think that was acceptable and began conversation with local universities about allowing Brian to take courses there. Years later, there is a workgroup called the Indiana Postsecondary Education Coalition whose mission is built around a world in which young adults with developmental and intellectual disabilities can choose to take college courses if they want to because it will help them to have a better career and to be more independent. Thank you Kate for helping Down Syndrome Indiana dream bigger for all of our families!
Why a Star?
Focus: Parents, siblings, educators, and other friends and family often describe individuals with Down syndrome as "stars" or the center of attention. The star logo recognizes that quality, and reminds us of our need to challenge ourselves and society to see all individuals with Down syndrome for their contributions to their community.
Achievement: A star has long been a symbol of achievement. The star logo reminds us of the importance of all "achievements" of individuals with Down syndrome.
Inspiration: As a group of people familiar with the history of Down syndrome and it's treatments, we recognize that we are still at the beginning of our journey to discover the full potential of individuals with Down syndrome. The star represents our collective reaching for a brighter future for all individuals with Down syndrome.
Meet Ann Gibson:
Ann has been a wonderful board member and officer of DSI for many years. Early in Ann's service on the board the Buddy Walk(R) was without a leader and Ann stepped up and took charge, resulting in a very well organized and successful Buddy Walk(R). At a board meeting after that walk, Ann said that chairing the Buddy Walk(R) committee was one of the most rewarding things she had done. And, Ann has done all this service for children with Down syndrome and their families even though she does not have a family member with Down syndrome. When she agreed to serve on the board, she said that she wanted to do something to help others and she saw Down Syndrome Indiana as an organization in which she could fulfill that need. People with Down syndrome, their families and our community have benefited so much from Ann's commitment. Thank you Ann!
Meet Katie Shaw:
Katie is a remarkable individual with a drive for excellence! For Katie, no job is left undone. Whether it is filing paperwork, lifting heavy boxes, visiting donors, assisting staff, etc. Katie is one of the most dependable and reliable volunteers that we have here at DSI. She is an inspiration to all of us! Thank goodness for volunteers like Katie!
Meet Kate von Eiff:
Brian von Eiff, Kate's son, dreamed of going to college like his Best Buddy, Brad, but there were no programs in Indiana for Brian to attend. Brian's mom, Kate, didn't think that was acceptable and began conversation with local universities about allowing Brian to take courses there. Years later, there is a workgroup called the Indiana Postsecondary Education Coalition whose mission is built around a world in which young adults with developmental and intellectual disabilities can choose to take college courses if they want to because it will help them to have a better career and to be more independent. Thank you Kate for helping Down Syndrome Indiana dream bigger for all of our families!
Why a Star?
Focus: Parents, siblings, educators, and other friends and family often describe individuals with Down syndrome as "stars" or the center of attention. The star logo recognizes that quality, and reminds us of our need to challenge ourselves and society to see all individuals with Down syndrome for their contributions to their community.
Achievement: A star has long been a symbol of achievement. The star logo reminds us of the importance of all "achievements" of individuals with Down syndrome.
Inspiration: As a group of people familiar with the history of Down syndrome and it's treatments, we recognize that we are still at the beginning of our journey to discover the full potential of individuals with Down syndrome. The star represents our collective reaching for a brighter future for all individuals with Down syndrome.
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