July / August / September 2004
Page 1

This year's NDSS conference proved that parents everywhere have exactly the same major concerns we do here. One of the subjects of concern repeatedly mentioned the NDSS Conference this year was behavior. It's hard enough to get a typical child to listen to a parent, but when you throw into the mix cognitive and communication delays, medical problems and/or emotional problems, it's often difficult to come up with positive ways promote good behavior.
On September 24th DSAGNO members will have an opportunity to hear discussion on this very topic from one of our own. Sue McCann will speak to DSAGNO members and friends on Positive Behavioral Supports. Sue is a national certified counselor, licensed chemical dependency counselor, and certified special education teacher with over 17 years of experience providing services to individuals, couples, and families in private, hospital, and outpatient practice settings. She is also Mom to Marissa, who has Down syndrome.
Sue is the co-owner of Insights, Center for Personal and Emotional Well-being and works as an educational consultant for the Jefferson Parish Public School inclusion project, "Educating All Students Together." Sue also directs the Jefferson Parish Sibcamp initiative, a therapeutic program that supports siblings and families of children with disabilities. She collaborates with the Louisiana State Improvement Grant as a Positive Behavioral Support trainer and facilitator for Jefferson Parish Public Schools. Sue frequently conducts workshops for families, educators, and counselors in the local area and presents at state professional conferences on a variety of topics. Sue is a board member of the Louisiana Association for Marriage and Family Counselors and "Educating Everyone," a nonprofit organization dedicated to promoting inclusion of children with disabilities in Louisiana.
Please join DSAGNO on September 24th at 7:00 p.m. at Crane Rehab, 101 River Road, Jefferson Louisiana for discussion on this important topic. You won't want to miss this one!

For more information on this or other DSAGNO meetings or to RSVP, please contact DSAGNO at (504) 846-6903.

Karen Scallan

EDITOR’S NOTE Unfortunately, we were not able to bring you a profile in this issue due to an illness in our profile subject’s family. Instead, we invite you to take a look at our reprinted article “The O’Grady’s Make a Home” on page 9 about a young couple with Down syndrome and how they have built an independent life and found love with each other. This article shows how love and support can bring meaning, happiness and independence to the lives of those with disabilities.

If you have an article or item of interest for DSAGNO News, please contact Karen Scallan at kscallan@dsagno.org or (504) 846-6903.

September 10 Supporting Choice Training for individuals with disabilities, providers, case managers and others in supporting choice. If you are currently receiving waive services or if you are on the waiver registry, this training will benefit you. FREE, 10:00 a.m-1:00pm, Baton Rouge General Hospital, Mid-City, Conference Room 1. 3600 Florida Blvd., Baton Rouge. For more info/reservations: Stephanie Guillen, 1-866-216-7474.

September 16 New Opportunities Waiver Training for individuals with disabilities, providers, case managers and others on NOW Waiver. If you are currently receiving waive services or if you are on the waiver registry, this training will benefit you. FREE, 10:00am-1:00pm, Baton Rouge General Hospital, Mid-City, Conference Room 3. 3600 Florida Blvd. Baton Rouge. For more info/reservations: Stephanie Guillen, 1-866-216-7474.

September 16 Parenting Children Ages Birth-5 with Special Needs Feel like you're on an emotional roller coaster ride looking for supports and services. This is a series of sharing and training on how to receive no cost services to meet your child and family's unique needs. FREE. Child care provided for those registered in advance. LSU/HSC Early Intervention Institute, 1100 Florida Av., Bldg. 124. For more info: (504) 888-9111. To Register: (504) 942-8308.

September 17 History of Developmental Disabilities. History of disabilities and how far we have come in the past few years. FREE. 9:00am-11:00am, Peltier Lawless Developmental Center, Annex 2, 690 East 1st Street, Thibodaux. For more info/RSVP, Jeannie Doiron 1-800-331-5570.

September 22 How to Write an Effective IEP If your child currently has an IEP this workshop will benefit you. Barbara Ballard, Attorney for the LA DOE, will speak from 9:00am-11:00am. IEP clinic will be held from 1:00pm-3:00pm. Bring your child's IEP. FREE. 9:00 a.m-3:00pm, Baton Rouge General Hospital, Mid-City, Conference Room 1. 3600 Florida Blvd. Baton Rouge. For more info/reservations: Stephanie Guillen, 1-866-216-7474.

September 25 Effective Communication. See description under September 8 above. FREE 9:00am-12:00pm, Baton Rouge General Hospital-Bluebonnet, Conference Room 1, 8585 Picardy Av., Baton Rouge, LA. For more info/reservations: Jeannie Doiron, 1-866-216-7474.

October 3. DSAGNO Goes Bowling. 1:00pm-3:00pm, Colonial Bowling Lanes, Harahan. $8.50 per child. For more info, RSVP Pam at (504) 466-7176 or Karen (504) 467-7009.

October 4-5 Coleman Institute's 5th Annual Conference on Cognitive Technologies: "Enhancing the Quality of Life for People with Cognitive Disabilties." Denver Colorado. For more information, log on to:
http://www.cu.edu/ColemanInstitute/2004conference.htm

October 7 Parenting Children Ages Birth-5 with Special Needs. See description under Sept.16th.

October 16 Supporting Choice See description under September 10. FREE, 9:00a.m-12:00pm, Baton Rouge General Hospital -Bluebonnet, Conference Room 3, 8585 Picardy Av., Baton Rouge, LA. For more info/reservations: Stephanie Guillen, 1-866-216-7474.

October 21 Parenting Children Ages Birth-5 with Special Needs. See description under September 16th.

October 24 DSAGNO 3rd Annual Buddy Walk. City Park, New Orleans, Louisiana. Watch DSAGNO News and look for your special Buddy Walk newsletter edition for more information. To Volunteer or Sponsor, contact Marian Hauth and Pat Ehrle at (504) 846-6903.

October 27 Benefits Planning. C.J. Rogers, Project Director of the Louisiana Benefits Planning Assistance & Outreach Project will be presenting. FREE 10:00am-12:00pm, Peltier Lawless Developmental Center, Annex Room, 690 East 1st Street, Thibodaux, LA. For more info/reservations: Jeannie Doiron 1-800-331-5570

November 5 The Road to Self Determination. If you are currently receiving Waiver services or if your are on the Waiver registry, this training will benefit you. FREE 10:00am -1:00pm, Baton Rouge General, Mid City, Conference Rm. 1, 3600 Florida Blvd., Baton Rouge, LA. Limited space. For more info/reservations: Stephanie Guillen 1-866-216-7474

November 13. DSAGNO Goes to Global Wildlife. Arrive at Noon, Lunch in the Treehouse. $8.00 per person. Bring your own bagged lunch. For more info, RSVP Pam at (504) 466-7176 or Karen (504) 467-7009.

November 17 Ticket to Work. C.J. Rogers, Project Director of the Louisiana Benefits Planning Assistance & Outreach Project will be presenting. FREE. 10:00am-12:00pm. Terrebonne Parish Library, Meeting Room - 1st Floor, 151 Civic Center Blvd., Houma, LA For more info/reservatins Jeannie Doiron 1-800-331-5570

November 17 Benefits Planning. See description under October 27. FREE. 2:00pm-4:00pm, Peltier Lawless Developmental Center, Annex Room, 690 East 1st Street, Thibodaux LA. For more info/reservations: Jeannie Doiron 1-800-331-5570

November 18 Parenting Children Ages Birth-5 with Special Needs. See description under September 16th.

November 20 How to Hire and Train Providers-How to Choose a Provider. If you are currently receiving Waiver services or if you are on the waiver registry, this training will benefit you. FREE. 9:00am-12:00pm, Baton Rouge General Hospital-Bluebonnet, Conference Room 1. 8585 Picardy Ave. Baton Rouge. Space is limited. For more info/reservations: Sephanie Guillen, 1-866-216-7474.

Dates and times subject to change. Contact event organizer listed for up to the minute information.

Last year around this same time, I wrote an article on attending my first National Down Syndrome Society (NDSS) conference in St. Louis. Here I am again and I have just returned from my second NDSS conference in Washington, DC. Each year when I come home, I am so excited! I meet so many new friends, learn so many new things and have lots of fun. This month, I want to tell you why attending the conference means so much to me.
One of the most important reasons why I think the conference is important to me is because I attend it without my parents. I really feel like an adult. The first time I really knew I could be a self-advocate was after I came home from the conference. I did go to the NDSS conference with other DSAGNO board members, but I felt like I was important and people were listening to what I had to say. This was great! Everyone comes together because they have Down Syndrome or they have a family member who has Down Syndrome or they want to learn more about Down Syndrome.
One really great part of the NDSS conference this year was on the day before the conference began, a special self-advocacy session was held. Our group from DSAGNO decided to go and we met with representatives for our Senators and Representatives at the Capitol. It was awesome! In Partners in Policymaking classes that I have been taking since January, we learned about speaking to legislators and we practiced in a mock session. Paula, Karen, Marian and I each had a part to say to the representatives and it went very good. They listened to us and asked us questions.
The sessions were great and I could choose which ones I wanted to go to. My choices this year were: self-advocacy, employment, and public-speaking. I want to be a motivational public speaker so all of these sessions were good for me. I learned a lot, like not to be nervous or afraid to say what you feel and speak up for yourself. This is what I want to be able to teach other people to do in my career.
I am interested in being an NDSS Self-Advocacy Board member and I was able to meet and talk to Mia Peterson who is on the board now. Mia is an adult with Down Syndrome from Cincinnati. The way to become a board member is to apply when someone leaves or their time is over. I am definitely interested in doing that. You have to be voted in to be on the board.
On Friday and Saturday nights there was a dance and Chris Burke's band played. This is one of my favorite parts of the conference. It is so much fun meeting new people and having a good time. My good friend, Heather Hancock and her family were at the conference, too and I spent time with them, too. That was fun.
I was really tired when the conference was over because we were busy all the time. We are trying to see if NDSS will hold the conference in New Orleans in 2006.
Even though I was tired, I am now ready to be really busy being a self-advocate and helping others become self-advocates. This is what I like to do the best!
I am already looking forward to the next NDSS conference in Chicago in 2005!

The Louisiana State Developmental Disabilities Council is now accepting applications for their Partners-in-Policymaking program for 2005. This is a national leadership-training program for people with developmental disabilities and family members of young children with developmental disabilities. The program provides training in effective advocacy needed to influence public policy at all governmental levels. According to the LaCan newsletter, “The goal of Partners in Policymaking is to achieve productive partnerships between people needing and using services and those who make public policy and laws. It is designed to provide knowledge and skills building so that participants may work to obtain state of the art services for themselves and others.”
DSAGNO President and PIP graduate of 2001, Paula LaCour, states that “candidates are reviewed and are chosen from various areas around the state based on their demographics, nature of disability and potential to use what is learned in the program to effectively advocate for those with disabilities. Participants must commit to attend sessions on 8 weekends, 1 weekend per month. The sessions last from Friday mid-day until Saturday afternoon.” Many expenses are covered by the DD Council.
For more information about this program and an application is available on the DD Council’s web site at http://www.laddc.org/plans/activities/pip/index.php or contacting Vince Walker at the DD Council office, 225-342-6804 or toll free at 1-800-450-8108. Applications are also available at the Families Helping Families resource center in your region. You can locate the center in your region at http://www.fhfla.org/fhfcenters.php.

Try these fun activities to increase fine motor skills:
Play-doh / modeling clay - roll dough between each finger and thumb to form small balls, roll dough into a snake, use palms to push dough flat like a pancake, cookie cutters, cut with knife or scissors, pinch and pull the dough, hide small items in dough for child to find, layer a cookie tray with modeling clay and have child draw shapes and lines with a pencil or toothpick
Spray bottles or squirt guns - squeeze trigger with index and middle finger while holding with thumb, ring, and little fingers.
Stringing beads - use pipe cleaners, yarn, or shoestring to string small beads, cheerios, fruit loops, macaroni, or cut up straws
Tear tissue paper or construction paper to make a collage
Hide and find small items such as pegs, beads, coins in silly putty, play-doh, or theraputty
Bubble wrap - pop the bubbles with thumb, index, and middle fingers
Tweezers (large or small) - pick up small objects with tweezers and place them in a small container such as an ice tray for sorting or on paper to make a design
Cooking activities - put sprinkles on cookies using thumb and index finger, roll out / press cookie dough, crush cereal or cookies with hands and fingers and sprinkle on ice cream / yogurt

Help with hip abduction problems:
If you have been looking for a way to prevent excessive hip abduction in your children, Hip Helpers® may be the answer. Lower extremity abduction is very common in children with low muscle tone and ligament laxity. Hip Helpers® prevent a wide base of support and limit "W" sitting in children who are developing their movement skills.
Hip Helpers are elastic shorts that are sewn together between the child's legs to prevent abduction. The shorts come in various sizes and colors. The standard sizes are $14.00 per pair. If your child does not fit into the standard sizes, custom shorts are available for $20.00 per pair.
For more information, check out www.hiphelpers.com or call (757)481-2407.

Heather Harris, OTD, LOTR and Holly Neeson, MPT are therapists with Crane Rehab, located at 101 River Road, Jefferson Louisiana. You can reach them at (504) 828-7696.

The Sibling Slam Book: What It's Really Like to Have a Brother or Sister with Special Needs
Edited by Donald J. Meyer

Give teenagers a chance to say what’s on their minds, and you might be surprised by what you hear. That’s exactly what Don Meyer, creator of Sibshops and author of VIEWS FROM OUR SHOES did when he invited together a group of 80 teenagers, from all over the United States and abroad, to talk about what it’s like to have a brother or sister with special needs. Their unedited words are found in THE SIBLING SLAM BOOK, a brutally honest, non-PC look at the lives, experiences, and opinions of siblings without disabilities.

Formatted like the slam books passed around in many junior high and high schools, this one poses a series of 50 personal questions along the lines of: “What should we know about you?” “What do you tell your friends about your sib’s disability?” “What’s the weirdest question you have ever been asked about your sib?” “If you could change one thing about your sib (or your sib’s disability) what would it be?” “What annoys you most about how people treat your sib?”

THE SIBLING SLAM BOOK doesn’t “slam” in the traditional sense of the word. The tone and point-of-view of the answers are all over the map. Some answers are assuredly positive, a few are strikingly negative, but most reflect the complex and conflicted mix of emotions that come with the territory. Whether they read it cover to cover or sample it at random, teenagers will surely find common ground among these pages and reassurance that they are not alone. It is a book that parents, friends, and counselors can feel confident recommending to any teenager with a brother or sister with a disability.

From My Side
By Craig Blackburn

Lots of people ask me what I am doing and what I want to do. That is easy for me to answer. I want what everyone else wants mostly. I want a career, to own a home, to fall in love and get married, have lots of friends and be happy.

I have a job now that I have had for six years. I work at Winn Dixie as a clerk and mostly I bag and carry out groceries for customers. I really like it and I really like the people I work with. They are my friends and we are really close. I don't work full time and sometimes my hours are as few as eighteen to twenty a week. I don't make enough now to be able to buy a home. That is my first step toward independent living. That is the goal I am now working on.

I am looking for a career. I have completed a resume with my parents help and I have applied for some jobs that will give me a career. They are mostly professional jobs working in an office. I really like people and I would be best working with lots of people. I could be a teacher's aide because I am good with kids and really like them. I like computers, too, so I could find a job working in that area. I love sports and have been the manager of school football teams for many years, so I could have a career in this area, too. I could work for a sports team or a Parish recreation department. I could work for a hospital as a courier or a transporter. I could work in a library filing books or checking them out.

The career I would like the best is to have my own business doing public speaking on self-advocacy. That is what I have been working on for the past year. I have been very lucky that Mr. Kirby Joe Lacour has volunteered his time to work with me on becoming a public speaker. We have done a lot of work and Mr. Kirby Joe has been really good to me. We have taken a break during the summer and I am preparing a one-page resume on myself. Once it is complete and Mr. Kirby Joe thinks it is ready, I will send it to schools and organizations with a letter for public speaking jobs. At first, I will do these for my expenses and when I become a really good public speaker, I can turn it into the career that I really want. I think that God has been good to me. He has given me a great family, friends and people who help and support me and He wants me to show others that they can succeed like I have been able to. The best way that I can do this is to be an example. That is the career I want.

OCLB Web Site

Our Children Left Behind is an excellent up-to-the-minute informational web site on IDEA and it’s reauthorization with sample letters, articles and more. Post a message or receive the newsletter on line. Check out this excellent web site at www.ourchildrenleftbehind.com. Most immediate action items are clearly marked with “What You Can Do” information available on each item.
Currently, OCLB notes the voluminous response they’ve received to the press release entitled : House Republicans Express Disappointment at Senate Democrat Refusal to Go to Conference on IDEA Reauthorization; School Groups Have Urged Senate Democrats to Change Stance & Work with House and Senate GOP for Final Bill. If you’d like to respond to this press release, there is a form letter on OCLB’s site you can download.

IDEA and the David Vitter Constituent’s Meeting...

As you may know, NDSS, the Arc and UCP all are in opposition to any conference on the IDEA reauthorization bills passed by both the House and Senate. Most major disability groups oppose a conference and prefer to start over with input from parents, not just school groups.
Armed with this and other advocacy skills honed at this year’s NDSS Conference, a small but mighty group of 7, many of whom are also DSAGNO members, attended a town meeting presented by David Vitter to voice their opposition to the reauthorization of IDEA.
Mr. Vitter has voiced his support in the past for the reauthorization of IDEA which includes, among other things, provisions to require only 3 year IEPs, no short-term objectives, and no provisions for attorney’s fees when a parent has to force a school to provide the FAPE (Free and Appropriate Education) their child is entitled to under the provisions of IDEA.
This group of 7 people, while small in size, presented over and over again to Mr. Vitter why the reauthorization of IDEA will harm our children. In the end, Mr. Vitter was attentive and asked for suggestions on how help to ease the paperwork burden on teachers. He asked for further input and contact from the group and suggestions he could bring back to DC for changes that would benefit both teachers and students.
The group has obtained considerable information (with the help from NDSS Policy Center’s Ricki Sabia) and will be presenting this information to Mr. Vitter soon. We’ll keep you posted.

IDEA Policy Statements...In it’s most recent meeting, the DSAGNO board voted to adopt NDSS’s IDEA Policy Statement. Copies of the statement will be available at the next general membership meeting for those interested. Unable to attend? Contact Karen Scallan at (504) 846-6903.

NDSS recently launched UpBeat--a new and improved version of News & Views, the nation's only magazine written for and by people with Down syndrome. This new magazine aims to further promote social inclusion by featuring current events, celebrity interviews, reviews of movies, books and music, a self-advocacy column, poems and artwork, and much more.

The first issue of UpBeat was published in July and features an interview with John C. McGinley, National Buddy Walk Spokesman, as the cover story.

Other articles include:
• From the Editor's Desk -- A letter from Chris Burke to readers
• We Speak Out -- Thoughts on self-advocacy by Mia Peterson
• News You Can Use -- An overview of the upcoming
Presidential election and information on voting
• Sports Stuff -- Brendan Hammeke tells us about his
upcoming swimming competition and previews the
2004 Summer Olympics in Athens
• How to Plan a Buddy Walk -- Sara Wolff encourages others to
organize Buddy Walks in their communities
• My Life -- Casey Hammeke writes about her experiences
performing with the Wings! play troupe
• At the Movies -- A review of "Seabiscuit" by Chris Burke
• Healthy Living -- Tips for taking care of your teeth
• For More Information -- Web links to read more about topics
discussed in the articles
• Pop Quiz! -- A fun quiz to see if you remember what you read
in the magazine

Chris Burke continues to serve as editor-in-chief of the magazine, and he encourages teens and adults with Down syndrome to contact the UpBeat staff at info@ndss.org if they are interested in writing articles, submitting photos or artwork, etc.
To subscribe to UpBeat, visit the NDSS Store at www.ndss.org.

Our House
A Parents Perspective...
By Kirby LaCour

This will be a two-part article with this issue briefly discussing independence and the next, self- determination from an "Our House" perspective. Sometimes, there is a fine line between the two and as parents we have a hard time deciding whether it is the child's need to do it own their own (independence), or is the child just determined to do it (self-determination).

According to Mr. Webster the two are defined as follows: Independence - the ability to be free from control or authority or the influence of others. Countries have fought for it. People have rioted and revolted to get it. If we are lucky our kids are born with the desire to seek their own independence.Selflf-determination - free will to determine one's own mind.

At our house everyone is so independent that we sometimes forget it is all right to ask for help. While, we want Hannah to be independent we also want her and her sister to know that they can rely on others if needed. We never rush in to assist, but we will offer. One of the major parts of Hannah's continuing education as she grows is to establish her independence and know her limitations (which we hope are not many). However, by encouraging her to seek her level of autonomy she can remain focused on tasks at hand. We listen to Hannah and can tell when she wants her independence by a phrase she uses, "My do it". If she puts a No in front of the phrase, we know we are interfering and need to back off! At this point we also know if she needs help she will ask. It is easy for us to rush in and help, but that creates dependence, thus defeating our goal.

We have simple rules about helping or assisting her: assist only if safety and security are issues, or, if we do not assist it may cause frustration or aggressiveness towards others in completing her tasks. By giving Hannah her independence, it will provide for greater self-determination. However, that is the next article.
Have a great Labor Day! We will at Our House.

Page 9
O'Grady's Make a Home
By: Peggy Kreimer, Cincinnati Post staff reporter, August 2, 2004
Reprinted with permission from The Cincinnati Post

Shawn and Heather both have Down syndrome--a genetic abnormality that results in mild to moderate mental retardation and an array of physical difficulties. Many of their friends with Down syndrome live with parents or in group homes. The O'Gradys are married, own their own condo, go to work, shop, cook, clean, play softball, go square dancing. "They're the heroes of everybody," said Shawn's mother, Eileen O'Grady of Fairfield. "They have what everybody wants. They have each other. They're out on their own."

Starting this month, Heather O'Grady is saying a very public "Thank You" to Greater Cincinnati for helping them find that independence. Heather is featured in the United Way campaign film that will be shown in work places and campaign programs throughout Greater Cincinnati and Northern Kentucky through October. The film highlights a few United Way agencies and their clients and was released in time for the first early campaigns that are just beginning. The full campaign starts Sept. 2. In the film, Heather is shown striding proudly through the aisles of a Meijer grocery store where she worked as a bagger -- a job she got with the help of the Abilities First agency in Middletown, which serves people with disabilities. "Thank you for helping us out through United Way," Heather says in the film.

Reality has given the film a deeper message: that help is not a one-time need. Shortly after the film was made, Heather lost her job at Meijer when the store introduced an automatic bagging system. As the film was being packaged and distributed, Heather O'Grady was again working with Abilities First to find another job. It is an example of the ongoing need for support and a testament to perseverance, said her mother-in-law. "When you're dealing with Down syndrome, you learn never to set limits," Eileen O'Grady said. "You learn never to give up." "With Shawn, we've never let it get in the way of living a full life," she said. From days after his birth, the O'Gradys were working with special programs to

From the beginning, Shawn was reaching beyond general expectations. Heather has that same optimistic drive, Eileen O'Grady said. She had worked at a Wendy's for five years before she and Shawn married a year ago today. The move to a condo in Fairfield near Shawn's parents made the commute to Heather's job impractical. That's when she started at Meijer, which was close to Shawn's full- time job in the mail room of Cincinnati Financial in Fairfield. "Before they were married, we all sat down and talked about what it would take to be on their own. Heather had to have a job to help with expenses," Eileen O'Grady said. The couple also decided that they could tackle their own physical and mental challenges, but they do not plan to add children to the mix.

Shawn's parents helped purchase the condo, which combines the benefits of home ownership without the yard work and outdoor maintenance chores. Susan Mayberry of Abilities First has become a part of their extended family, helping deal with transportation and other independence issues. In their first year of marriage, they've developed workable routines. "I cook big meals on Monday," Heather said. Meatloaf, mashed potatoes and carrots was the fare last week. "Tuesday is tacos," she said. "She's an unbelievable cook," Shawn said, rolling his eyes and drawing a laugh from his bride. "He always cracks me up," Heather said. The couple do their own shopping, cooking and laundry. Abilities First helps with taxes, and Shawn's parents do most of the monthly bill-paying paperwork for now. Independence with support. That's what makes it work, Eileen O'Grady said. Shawn and Heather O'Grady seem to be getting more independent every day. Framed photos in their living room chronicle their wedding and activities with friends -- basketball, cheerleading, water skiing. "When we got married, my parents were worried something would happen to me and Heather wouldn't know what to do," Shawn said. He's had some recurring stomach problems. Last month Shawn had to be rushed to a hospital with severe stomach pains. Heather reacted immediately. She made the right phone calls and got help. That mixture of tenderness and action is part of what Shawn fell in love with. "She's so lovable and beautiful," Shawn said. "Oooh, I like

See O’Grady’s, continued on page 10.

We all have our own ideas about independence. Those ideas of what makes a successful, independent life, constitute our own self-determination. We make decisions, conscious and subconscious, every day which guide us to a greater independence. We choose a mate that will support, not become an obstacle to, our independence. We choose a work situation that allows for independent growth and enjoyment of our job. We choose a circle friends and associates that is supportive in our choices. We decide where we live and with whom. How many of us would stand for being told with whom we have to live or how we have to spend our money?

Self-determination and independence go hand in hand. To be independent, in the true sense of the word, a person must have control over their own life choices and the opportunity to both make mistakes and learn from those mistakes. Self-determination is the soil from which independence grows. It is the control over your destiny that makes one an independent adult.

All too often, when it comes to a person with a disability, choices are made for "the consumer" instead of by them. This is not independence. This is DEpendence. When we are not allowed to make our own choices to reach our own potential, we are not independent. We are being told what is good for us by outsiders. This is true for everyone, including people with disabilities. Ultimately, as hard as it is, we have to give our children all the tools they need to be adults in the full sense of the word--to make choices and to fail and learn from their mistakes. As a society, we have to give adults with disabilities the tools they need to be independent adults...the opportunity to exercise their own self-determination.

If you know of a family in need of information and referral assistance or support, contact DSAGNO at
(504) 846-6903.

66 Emergency Waiver Slots
Available August 20th

During the last legislative session, LaCan successfully obtained funds for 66 emergency waiver slots which became available as of August 20th. A fact sheet about availability and eligibility can be found at LaCan’s web site:
: http://www.lacanadvocates.org/pdf/er-waiver-facts-aug04.pdf

O’Grady’s, continued from page 9.

that," Heather teased. "And she's kind,"Shawn said. "And I know she's smart." Heather reached over and squeezed his hand. "Before we got married, I asked my mother if she was worried," Heather said. "She said 'A little bit' Then I got scared myself. But I'm not scared now," she said. "Shawn lights up my face. When I'm with him, I'm happy."

Text Box: About Down Syndrome Down Syndrome is a genetic condition caused by an extra chromosome 21. It occurs in one of every 800 to 1,000 live births, and most cases appear to have no connection to heredity. It affects all races. The incidence of Down Syndrome increases when the mother is over age 35. Characteristics include low muscle tone, delayed motor development and mild to moderate mental retardation. Physical traits can include small ears, flattened facial profile, and a tongue that may be large for the mouth size, creating minor difficulties in speaking clearly.

SOURCES: Susan Mayberry of Abilities First, Middletown, (513) 423- 9496 and the Down Syndrome Association of Greater Cincinnati, 644 Linn St., Suite 408, Cincinnati, Ohio 45203, (513) 761-5400, Web site ww.dsagc.com (C) 2004 The Cincinnati Post. via ProQuest Information and Learning Company; All Rights Reserved

State governments have historically looked upon institutions including nursing homes and group homes, as an easy way to address the needs of the frail elderly and people with significant disabilities. In fact, for people on Medicaid or with limited funds, institutionalization was often presented as the only option.

On June 22, 1999, the United States Supreme Court held in Olmstead vs. L.C. that the unnecessary segregation of individuals with disabilities in institutions may constitute discrimination based on disability. The court ruled that the Americans with Disabilities Act may require states to provide community-based services rather than institutional placements. This landmark decision was brought about due to the efforts of two tenacious women from the State of Georgia who insisted upon being given the freedom to choose where they live. The Supreme Court ruled that their continued institutionalization constituted "unjustified isolation" and was a violation of their civil rights.

Save The Date!!!

DSAGNO’s 3rd Annual
BUDDY WALK 2004
SUNDAY, OCTOBER 24th
City Park’s Roosevelt Mall

Registration Opens 7:30 a.m.
Walk begins at 8:30 a.m.
Food, Fun for the Whole Family
Entertainment by
The TOPCATS
and
Papillion

Download your registration form today by
visiting the "BUDDY WALK" section of
WWW.DSAGNO.ORG

February 2004 - More than ten years after passage of the ADA, New York State still has thousands of people with disabilities in institutions, nursing homes, sheltered workshops and segregated school programs that are more restrictive than necessary to meet their needs.

In 1999 the Olmstead ruling by the US Supreme Court made it clear that the ADA requires states to serve people with disabilities in "most integrated settings". Shortly thereafter, the US Department of Health and Human Services forwarded a memorandum to all state Medicaid Directors addressing the issue of state compliance. This document called for the development of state Olmstead Compliance Plans, with input from people with disabilities and advocates. To date, New York has not developed such a plan. As a result, the state faces a growing risk of potentially expensive and disruptive lawsuits.

Every state department and agency that operates, funds or regulates residential institutions and/or segregated congregate programs - including the Department of Health, the Office of Mental Health, the Office of Mental Retardation and Developmental Disabilities, and the State Education Department - should be required to move people into most integrated settings in accordance with the terms and conditions set fourth in the ADA.

Planning must be comprehensive and include: 1) mandated reforms of state agency information systems to facilitate tracking requests to move from restrictive to more integrated settings; 2) effective methods for directly informing every eligible individual of their right to a more integrated setting and services; 3) the removal of all legal, regulatory, or administrative requirements that segregated facilities be "backfilled" before people can leave them for more integrated settings; 4) the removal of fiscal incentives that provide more funds to support segregated programs than to serve people with the same needs in integrated settings ; 5) long-range planning for the inevitable downsizing and closure of segregated facilities, including plans to support and compensate voluntary providers who make good-faith efforts to reduce their use of congregate settings; 6) sufficient oversight of local or regional jurisdictions and where necessary, funding differentials to ensure that movement to more integrated settings occurs with equal speed and in numbers equally proportionate to population density in every locality in the state.
There is no acceptable rationale for keeping people in segregated settings. Public policy should support the fullest possible independence, inclusion, and participation in the community for both children and adults with disabilities. The fact is, this approach would actually reduce government spending because integrated community-based supports are, on average, less expensive than restrictive, segregated programs. Moreover policies that embrace rather than isolate persons with disabilities actually increase government revenue because people who live in their own homes with the support they need to travel in their communities are more likely to get jobs, pay taxes and contribute to the economy. It is right thing to do. And... it's the law

Lazy eye is one of the most serious yet correctable eye disorders in babies: Catch it early, from age 6 months through preschool, and it's easily corrected -- but wait too long and one eye can go virtually blind.

But how do you test a baby's eyes?
The answer lies with that annoying red eye in flash photographs and a new computer software to test children. Scientists hope eventually babies and toddlers will get easy screenings not just from eye professionals, but from pediatricians and day-care centers.

"If all pediatricians could do this, you wouldn't need pediatric eye doctors," says Dr. Gerhard Cibis, ophthalmology chief at Children's Mercy Hospital in Kansas City, Mo.
"A skill problem and a manpower problem" means less than half of children today are diagnosed before kindergarten, when a cure is easiest.

That's not just a problem with lazy eye. One in four school-age children has some vision problem, yet experts say the vast majority don't have a true eye exam before starting school -- even though vision and learning are inextricably linked. Indeed, some studies suggest 80 percent of children who have trouble reading have eyes that don't properly coordinate or focus.
Typical eye charts, even with symbols instead of letters for the very young, aren't enough. They may catch serious nearsightedness, but don't test if eyes focus and shift properly between distances, if the eyes work together or are hooked up to the brain correctly to give realistic images.

Amblyopia, or lazy eye, afflicts up to 5 percent of children who have one eye so much stronger than the other that it eventually takes over and renders the weaker eye useless. Catch it young -- ideally before kindergarten but definitely before age 9, when brain-eye connections are set -- and it's fixable by patching over the strong eye for a few hours a day, thus exercising the weak eye's brain links. Continued...

DD COUNCIL ANNOUNCES
NEW 800 NUMBER

The Louisiana State Developmental Disabilities Council has a new statewide toll-free number. This line was established so callers can have direct access to Council staff without going through DIAL. The new number is (800) 450-8108.

Lazy Eye, continued...
To properly check children's vision, eye professionals shine a special instrument called an ophthalmoscope into the pupil to cause a red reflex-- the same red eye your camera flash causes. Compare this reflection of light from the back of the eye to pupil size, distance from the light and the light's angle, and doctors can diagnose nearsightedness, farsightedness, astigmatism and other disorders.

If both eyes have the same problem, the child may just need glasses. But if one eye is nearsighted and the other farsighted, or if they don't focus together, the disparity can cause amblyopia.
Few people are skilled in such diagnosis. To compensate, Lions Clubs screenings shoot special black-and-white Polaroid photos of toddlers for experts to analyze. But if a child isn't looking directly at the flash, that doesn't work, Cibis says.

So with Lions Club funding, Cibis and University of Missouri-Columbia computer engineer Jim Kelley are creating software that scans videotape of babies' faces, pinpointing pupils and measuring the red reflex. For an extremely nearsighted eye, for instance, the computer shows greater brightness on the pupil's left edge; a farsighted eye lights up on the opposite edge.
The goal is to use the computerized test for routine screening, such as in day-care centers.

That could be several years away. Until then, make sure your children get a comprehensive eye exam from an optometrist or ophthalmologist before starting school.
And the American Optometric Association recommends an eye exam every two years starting at age 6 months -- more frequently if vision problems are detected.

For more information, go to the American Optometric Association's Web site at http://www.aoanet.org.

DSAGNO Buddy Walk veterans know that each year we pick a theme for Buddy Walk to help deliver our message of awareness of the abilities of people with Down syndrome.
This year’s Buddy Walk Committee, co-chaired by Pat Ehrle and Marian Vigo, has chosen ADVOCACY for the theme of this year’s walk. Join the 2004 BW committee at Buddy Walk and let your representatives know how you feel about possible changes to IDEA by signing the petitions that will be available. Learn more about IDEA and get the information you need to advocate for your child’s future.

2004 BUDDY WALK T-SHIRT
DESIGN UNVEILED!


Get your Buddy Walk t-shirts while they last. This year’s 4-color t-shirt was designed by MJR Photography & Graphics.

Visit the "BUDDY WALK" section of dsagno.org to register and order your shirts today!

In recognition of National Down Syndrome Awareness Month, WoodbineHouse publishers will offer a 20% discount on books about Down syndrome during the months of September and October. To order books at the discounted rate, call 1-800 843-7323 or visit WoodbineHouse on line at:
www.woodbinehouse.com.

WoodbineHouse is also looking for photos for new books. If you would like to submit a photo of your child for possible use, go to www.woodbinehouse.com and click on the “Parents Submit Photos” box on the left.

The Coleman Institute for Cognitive Disabilties, University of Colorado

The mission of the Coleman Institute is to “catalyze and integrate advances in science, engineering and technology to promote the quality of life and independent living of people with cognitive disabilities.” Their goals are to “To empower the independence, self-determination, and productivity of individuals with cognitive disabilities; To strengthen the national and international voice in support of persons with cognitive disabilities; and To develop and support a community of researchers, clinicians, and public policy experts working in the cognitive disability field.
http://www.cu.edu/ColemanInstitute/

American Association on Mental Retardation

“AAMR promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual disabilities.” “Since 1876, AAMR has been providing leadership in the field of mental retardation. AAMR is the oldest and largest interdisciplinary organization of professionals (and others) concerned about mental retardation and related disabilities. Over 9,000 members in the U.S. and 55 other countries have chosen AAMR as their association. Over the years, we've developed and refined a mission statement and a sense of purpose, which is summarized in our 13-point Principles.” Sign up for their E-newsletter
http://www.aamr.org/ AAMR Disability Books online