January / February 2005
Page 1

Next General Membership Meeting......................................1
From the Editor .....................................................................2
How to Contact Us ................................................................2
Mark Your Calendars ............................................................3
DSAGNO Welcomes New Executive Director.....................3
Letter from the Executive Director.......................................4
“I.D.E.A.? I Don’t Have a Clue”.............................................4
A New IDEA: Summary of How the Reauthorization
of I.D.E.A. Will Affect Your Rights.........................5
From my side ........................................................................7
Rumors Prove True...Jolly Old Elf Spotted
At DSAGNO Holiday Party!!!! ................................7
Craig Blackburn Receives Ken Vince Memorial Award.....8
Our House, A Parent’s Perspective.....................................8
Birthdays ...............................................................................8
Profile: Emma Ryan, Another One of the Girls.................9
A Mother’s Prayers Realized..............................................12
Calling All SIBS!! ................................................................13
Ochsner Offers Free Car Seat Checks .............................13
Parent Tips.,.........................................................................13
Governor Blanco Pledges Her Commitment to
Health Care Reform .............................................13
Sending Your IDEA Comments to Dept. Of Education....14
Websites...............................................................................14
Coming Soon.......................................................................14

So many times as parents we hear from everyone from professionals to relatives and “well-meaning” passers by about what our kids can’t or won’t be able to do. Here’s a chance to focus on what they CAN do—which is a whole lot more than we think!.
Recently, Craig Blackburn addressed several hundred people, parents and professionals alike, at the “Partnering for a Lifetime of Success” conference in Alexandria, Louisiana. Craig spoke about his life, his drive to succeed and how the success he has achieved in life is possible for everyone. As Craig spoke, a slide show of photos of Craig as a child, graduate and young adult were shown on the screen behind him. This powerful speech given from Craig’s own perspective left the audience empowered, full of hope and out of tissues as there wasn’t a dry eye in the house. DSAGNO is honored to bring Craig’s message of hope and success to members and friends of DSAGNO at our next general membership meeting on February 18, 2005, 7:00 pm at Crane Rehab.
Introducing Craig at DSAGNO’s meeting will be Dr. Yvonne Adler, Executive Director of Special Education and Student and Community Services for St. Charles Parish schools. Dr. Adler knew Craig throughout his education in St. Charles Parish and in her introduction she will give her unique experience as an educator watching Craig’s progress and success through school.
Be sure to mark your calendars because you won’t want to miss this evening with Craig Blackburn. Children will be accepted in the gym for therapy as usual; however space in the gym is limited. Please call DSAGNO at 846-6903 to reserve your spot and RSVP if you will be attending.

Ann Lafourcade

January 22. West Bank Self-Advocates. 11am-1pm, 635 4th Street, Westwego. For more info: (504) 888-9111.

January 25. Record Keeping. Tips to organize school records, medical records and important papers. FREE. 9am-11am, Westwego Library, 635 Fourth Street, Westwego. For more info: (504) 888-9111

January 25 Positive Behavior Intervention. Strategies for Individual Education Plans. FREE 9am-11am, St James Parish Library, 1899 W. Main Street, Lutcher. For more info/registration: Madeline Lombardi, 1-800-331-5570

January 26, Jefferson Parish Transition Fair. 5pm-7pm. Jeff. Parish Public School System Admin. Bldg. Auditorium, 501 Manhattan Blvd., Harvey.

January 27. Record Keeping. See description under Jan. 25. FREE. 9am-11am, Gentilly Library, 2098 Foy St., New Orleans. For more info: (504) 888-9111

February 10. How to Budget. Basic budgeting, secure and maintain a checking account, frugal ways to save money. FREE. 6pm-8pm, Terrebonne Parish Library, 151 Civic Center Blvd, Houma. For more info/registration: Jeannie Doiron 1-800-331-5570.

February 16. So You Want To Live On Your Own! Facts about moving and living independently. 6pm-8pm, Nicholls State University, Century Room -(Red Door under Stadium), Thibodaux. For more info/registration: Jeannie Doiron: 1-800-331-5570

February 16. Effective Advocacy. For parents and professionals to talk about issues and concerns regarding their child or families they work with. FREE. 9am- 12noon, Terrebonne Parish Library, 151 Civic Center Blvd, Houma. For more info/registration: Brandy Pray 1-800-331-5570

February 18. DSAGNO General Membership Meeting. An Evening With Craig Blackburn. What can someone with Down syndrome accomplish? Come and hear about the remarkable achievements of this incredible young man and listen to his powerful message of hope and “can-do” spirit. FREE and Open to the Public. 7pm-9pm, Crane Rehab, 101 River Rd., Jefferson Louisiana. Limited child-care provided. For info/child-care reservations and RSVP, (504) 846-6903.

MARK YOUR CALENDARS cont...

February 28 DEADLINE FOR SUBMISSION OF COMMENTS ON IDEA. (See our articles inside this issue).

February 28-March 2. “Partnership for Empowerment.” Three-Day Disability Policy Seminar in Washington, DC to focus on how to effectively advocate on disability issues before the US Congress. Five disability organizations join hands to present this annual disability policy seminar at the Renaissance Hotel. Highlights include presentations on Social Security, Medicaid, welfare reform, and Workforce Investment Act. The program includes a luncheon with congressional leaders and a reception on the Capitol Hill. To learn more and register, visit http://www.aamr.org/Events/2005.htm

March 17. How to Protect Yourself. Basics of staying safe in your home and in the community. Learn about abuse and neglect. FREE. 6pm-8pm, Lafourche ARC, 100 West Main Street, Thibodaux. For more info: Jeannie Doiron 1-800-331-5570

DSAGNO Welcomes New
Executive Director, Mike Rapier, Jr.

Please join the Down Syndrome Association of Greater New Orleans’s Board of Directors in welcoming its first Executive Director. Already a familiar face to DSAGNO members, Mike Rapier, Jr. was hired as DSAGNO's Executive Director in December and will be taking over many of the day-to-day operations of the organization, freeing our parent volunteers and Board members to do more advocacy work and attend to our families.
Most of you know Mike as the man behind the camera at our events, but not as many people know the countless hours he's devoted to our organization by volunteering to go above and beyond in helping us achieve our goals and objectives. Mike will continue to format our newsletter and act as webmaster for our web site and will also continue to work closely with various DSAGNO committees, particularly the Buddy Walk committee. He will also be taking your calls at our office located in the Jefferson Parish Human Services Authority Building in Metairie. So take a minute to give him a call at (504) 846-6903 to say hello.
Our new Executive Director will be an incredible asset to our organization and the Board of Directors is pleased to have someone who brings such talent, experience, and knowledge to the organization and such dedication to our families. His first order of business, ...a letter to DSAGNO membership inside this issue. See page 4.

A Letter from the Executive Director...

A little over two years ago, the words Down syndrome meant very little to me. With the exception of a distant relative who had a son with Down syndrome, I had little or no contact with anyone even remotely associated with the disability. When I donated my services during the first annual Buddy Walk in 2002, I did not foresee that in two years time I would be hired as Executive Director of DSAGNO. To say that I have been educated in the meaning of Down syndrome would be an understatement. So now I begin.

Since that first Buddy Walk, I have worked on 16 DSAGNO Newsletters, constructed and maintained over 80 pages of DSAGNO website, attended many meetings and seminars, volunteered for two more Buddy Walks, and taken DSAGNO to two National Down Syndrome Society conferences. And, in that time, I have not only learned a great deal of what Down syndrome is all about, but I have, in a way, lived it through the friends that I have made since that first Buddy Walk. It is this experience that has led me to where I am today, working for you, your children, and families touched by Down syndrome everywhere. And, I am doing this for myself and my own child as well.

“Together, I believe we can make a difference for the next generation and for ourselves as the parents of that generation.”

I have a 15 year old son who does not have a disability. He is about as typical as it gets. He gets good grades, he's on the wrestling team, and he aggravates me as much as he possibly can. Honestly, I have no complaints. He's a great kid. It is for his generation that I am doing what I can for DSAGNO and its families. The families that I have come to know closely, raise their kids, Down syndrome or not, no differently than I raise my own son. It is that attitude that I want to instill in the next generation. I hope DSAGNO to be a conduit between my son and yours, so to speak, for their future.

Were I the parent of a child with Down syndrome, what would I want out of an organization such as DSAGNO? This is the question that shapes the vision that I have, and that vision is fueled by two words; Information and Advocacy. As far as information, I'll deliver as much as I can find. When it comes to advocacy, I can't do it alone. I need your help to work for you. Together, I believe we can make a difference for the next generation and for ourselves as the parents of that generation.
I'm looking forward to hearing any comments and suggestions that you might have. I need to know what you, as members, want, so that I can make that part of our vision.

Mike Rapier, Jr.
Executive Director

“I.D.E.A.? I Don’t Have a Clue!”
BY Karen Scallan

Couldn’t you just cringe when you hear those acronyms? Most of us, especially new parents, have no clue what all these acronyms are for or why we should care? But, when you have a child with a disability, you have to learn the language of acronym-speak. Especially now with education in the news so much and all the talk about IDEA, FAPE, NCLB. But you’ll know when you’ve mastered it when you meet someone new who tells you they have a child with a disability and everyone around you is clueless when the two of you start talking in acronym-speak like you’ve known it all your life. Here are a few of the main acronyms you‘ll be hearing a lot about lately.

I.D.E.A. is the Individuals With Disability Education Act. This is THE education law which, among other things, guarantees children with disabilities a right to a “free and appropriate education” It also provides for early intervention services. Knowing the ins and outs of this law is extremely important to securing what your child needs in the way of education. Basically it’s the WHAT of special education. It defines what you and your child have a right to.
This law was just reauthorized (in other words re-done). Many of the provisions have changed and the changes will be instituted on July 1, 2005. But, before that time, public comment is now being accepted on the regulations that will delineate the HOW of IDEA—how it will be carried out. That is why you are hearing so much about I.D.E.A. Even though the law has been signed, public comment on the regulations is incredibly important to ensure there is no further erosion of rights of children with disabilities and their parents. (See IDEA Reauthorization summary in this issue and see what you can do to make a difference.)
FAPE stands for “Free and Appropriate Education” This is guaranteed to children with disabilities under IDEA. When you ask for something for your child in his/her IEP, to demonstrate need of the service, it must be necessary to enable your child to receive his/her “FAPE.”
NCLB is The No Child Left Behind Act of 2001. It effects the education of ALL children, including those with disabilities. In a nutshell, NCLB’s intent is to raise the standard of teaching for all students. For students in schools that are academically below standard, options are available under NCLB for such things as extra tutoring or alternative placement in schools with better track records. Advocacy groups raise concerns about NCLB and whether it will actually benefit all children, or, in fact, hurt those with disabilities as schools are graded based on test scores. Will the school teach the test or will they teach the entire curriculum? Will students with disabilities and their parents be encouraged to move children with disabilities to “alternative tests tracks” instead of standardized tests so that their scores won’t count and they won’t matter to the school’s accountability so less effort will be put into their education? Will this hinder the “Least Restrictive Environment” setting of children with disabilities? Will inclusion be sacrificed for the sake of test scores and a school’s report card?
Can IDEA and NCLB work together? Yes. There are provisions of NCLB that can help you get what your child needs under IDEA in his/her IEP. (How’s that for acronym-speak?). NCLB provides funds (although not enough) for various things such as paraprofessionals in the classroom. IEPs can be written for paraprofessionals to assist a certified teacher in teaching a child with a disability and NCLB funds can be used for that purpose.
Also, if your child is not doing well and his/her school is a school in need of improvement, you can have options under NCLB to move your child to another school or get extra tutoring among other options, depending on the school’s track record.
Look for more on NCLB in DSAGNO News issues to come.

SUMMARY OF IDEA 2004 NATIONAL COMMITTEE OF PARENTS AND ADVOCATES
ORGANIZEDTO PROTECT IDEA

The following is reprinted frDSS Information Alert
December 14, 2004

Dear Parents and Advocates,
On December 3, 2004, President Bush signed the Individuals with Disabilities Education Improvement Act Of 2004. Throughout the past two years, the National Committee of Parents and Advocates Organized to Protect IDEA worked diligently in an effort to ensure that the best interests of children were preserved in this reauthorization process. We appreciate your efforts and thank you for your assistance. Provisions that were very important to parents and advocates were lost or significantly changed from the current law. This new law has many changes that are likely to affect how education services are delivered to students with disabilities.
It is extremely important for family members and other advocates to understand the changes in the law and how these changes will make a difference to students. To help, the National Committee of Parents and Advocates Organized to Protect IDEA has developed the attached analysis of the new law for your information.
It is important to understand that the next step in the process involves rule making at the Federal level. We anticipate being involved in that process and will keep you apprised, since your input will also be critical. While that is happening, however, State Education Agencies and others will likely be reviewing this new law to determine what impact it may have on state laws and rules.

“It is extremely important for family members and other advocates to understand the changes in the law and how these changes will make a difference to students.”

Soon you will receive information suggesting ideas for working at the state level to preserve and protect the educational rights of children with disabilities. Key discussions

IDEA 2004 SUMMARY
This is a summary of some of the most critical changes affecting children with disabilities and their families in IDEA 2004, concentrating on the IEP process, due process and the discipline provisions. How these changes affect our children will depend, at least in part, on how the U.S. Department of Education interprets them through policies and regulations and how they are implemented at the state, district and school level. Most of these changes will be effective as of July 1, 2005.
A new provision in the Act authorizes the Secretary to issue only regulations necessary to secure compliance with the statute. This provision may limit the Secretary's authority to issue regulations that could be useful in clarifying ambiguities. A new section of the Act also suggests that states minimize the number of rules, regulations and policies to which the school districts are subject.
This law, as amended by the 2004 changes, will not provide mandatory full funding. Although the annual amounts now authorized (permitted) to be spent on IDEA would achieve full funding in six years, that assumes these amounts will actually be appropriated (spent), and explains why mandatory funding of IDEA is so important. In fact, two days after Congress passed the IDEA Conference Report with its "glide path to full funding" it appropriated significantly less funding for special education than it had just promised.

IEP PROCESS
1. Short-term objectives. The long established obligation for IEP teams to spell out short-term objectives for meeting each child's measurable annual IEP goals no longer exists for most children. Such short-term objectives are only required for the very small percentage of children (generally less than 1% of students with disabilities) who are taking alternate assessments aligned to alternate achievement standards. The No Child Left Behind Act (NCLB) limits Continued on pg 6...

“The long established obligation for IEP teams to spell out short-term objectives for meeting each child's measurable annual IEP goals no longer exists for most children.”

Parents should ensure that their child's academic IEP goals are also aligned with these standards. Short-term objectives are essential stepping stones toward these goals for all students with disabilities, not just a very small percentage. In states that offer alternate assessments aligned to alternate achievement standards, it is the IEP team that determines whether a child fits the criteria for students with the most significant cognitive disabilities. Parents, as members of the IEP team, may feel pressure to agree that their child fits these criteria in order to retain short-term objectives. Such pressure directly undermines the accountability provisions of NCLB.
Even if these short-term objectives are not mandated by law, all parents can still request their child's IEP team to identify them. IDEA 2004 still requires a description of how progress toward meeting will be measured and parents can contend that short-term objectives are the answer. Without short term objectives parents will have virtually no way of measuring whether their children are making progress in achieving their annual goals and will not be informed participants in their child's education. In addition, teachers will not have a guide as to the intervening steps that should be taken towards achieving these goals and when they should be taken. Teachers will also have great difficulty developing meaningful progress reports to the parents.
2. IEP progress reports. The progress the child is making toward meeting the annual goals must be reported, but there is no longer a reference to "the extent to which the progress is sufficient to attain the goal by the end of the year." This information seems especially important to parents and teachers if there is a shared commitment to help all children learn to high standards set for all. Parents may see progress all year only to realize in June that the progress was not sufficient to meet the goal.
3. Transition information in IEP. The amendments clarify that the transition process for a student with a disability now begins at age 16 and is not merely a plan for transition. Parents should request that the student's IEP, when appropriate, include a statement of inter-agency responsibilities and any needed linkages since this language is no longer in the statute.
4. IEP attendance and participation. A new section allows IEP team members to be excused from attendance if their area is not being discussed. When this section is read with new

“This option will limit parent participation in their child's education by not having a comprehensive annual IEP review, except in certain situations.”

goals -especially when benchmarks and short-term objectives are no longer required for all but those students with the most significant cognitive disabilities. Another serious problem is that the required elements under IDEA for these multi-IEPs are not as inclusive as for annual IEPs. This is true with respect to statements on progress reports, accommodations, supplementary aids and services and more. While, the states may include these as required elements in the multi-year IEPs, IDEA does not mandate that they do so. Parents in these states will have to consent to the 3-year IEPs that must be reviewed at natural transition points by the IEP team. Therefore, it will be critical that parents are informed, knowledgeable and well prepared to deal with any pressure that may be put on them.
6. Pilot program for paperwork reduction. The Secretary of Education is authorized to grant waivers of statutory and regulatory requirements, for a period not to exceed 4 years, to 15 states proposing to reduce excessive paperwork and non-instructional time burdens. The Secretary is prohibited from waiving requirements related to civil rights or the right of a child Continued, p.10.

From My Side
By Craig Blackburn

I was thinking about what I wanted to write about this month and Ms. Karen said the topic of the newsletter was about IDEA. This is something I think is very important.
Inclusion let me have a happy life and do the things that I wanted to do without feeling different. I know I have Down syndrome like other people with disabilities know they have a disability, but that does not mean that I want to be treated different or left alone or not have what other people do. Sometimes people forget this and they think that because a person has a disability, they do not have the same feelings as they do.
At my Partners In Policymaking classes, it was great because the classes taught all the students that advocating was not asking for something extra for people with disabilities, but just reminding others that everyone deserves the same things and has the same rights. It should not make a difference because they have a disability. Partners helped all of us learn how to communicate this message and who to communicate it to in making a difference. Making a difference is very important.
In November, I received a call from the Office for Citizens with Developmental Disabilities and the caller said I had been nominated to participate in a pilot program to assist in writing legislative policy. I had to go through an interview and just before Christmas, I learned that I had been picked. I will go to Baton Rouge, when requested and work with a committee and assist in writing legislative policy. I may even get to attend legislative sessions. This is really exciting. This is a way that I can help a lot. It will be good for me to learn how to work with a group and how to write legislative policy. I will write more about this as I become involved.
There is something everybody can do to help individuals with disabilities. My parents have told me that so many positive steps have been made for individuals with disabilities, but there are so many more that need to be made. Things will not just happen for us and we can’t take it easy and let things that we have all worked for be taken away. When you see articles or hear about IDEA, listen to what is being said and think about what it will mean to individuals with disabilities. If I did not have inclusion and the other resources that I had in school, I don’t believe I would be where I am now. I still have a lot to do and learn, and I don’t want to lose any of the resources that I need to do it and, I believe, other people with disabilities feel the same way. If you are a self-advocate or if you advocate for someone else, be someone who makes a difference.

EXTRA...!!! SANTA RUMORS PROVE TRUE...
JOLLY OLD ELF SPOTTED AT DSAGNO HOLIDAY PARTY !!

To the delight of everyone, especially the younger set, the jolly old elf himself appeared at DSAGNO’s Annual Holiday Party and bestowed early smiles on little faces as he passed out gifts galore. This year’s party included a virtual feast of holiday goodies and plenty of fun for everyone who attended. A beautiful tree and music by the Palmisano family provided the perfect setting for families to celebrate the season. Much thanks to the DSAGNO Social committee for taking care of the arrangements and coordinating the party. Check out additional holiday party photos on our web site photo gallery, www.dsagno.org.

On Wednesday, December 8, 2004, Craig Blackburn, received the Ken Vince 2004 Memorial Award. This award is given by the Governor's Office of Disability Affairs. Ken Vince was a rehab counselor who made a contribution to others by demonstrating full participation in life especially in the areas of independent living, supported employment and self-determination. As many of you know, Craig has lobbied representatives locally and in Washington for the preservation of rights of children with disabilities to receive a free and appropriate education. Craig has also acted as self-advocate and represented DSAGNO at two National Down Syndrome Society conferences. Please join DSAGNO News in congratulating Craig on receiving this award and wishing him continued success in his advocacy efforts.

BIRTHDAYS

January
Kyle Kocielniak
Maggie Biernart
Austin Edler
Mark Silvio
Leana Pivaral
Hannah LaCour
Brandon Firmin
Brandon Palmisano
Joey Hauth
Joshua Keller
Vincent Radosta

February
Megan Dodson
Sarah Gibson
Victoria Leonard
Celeste Rebstock
Marissa McCann
Angela Hall

Our House
A Parents Perspective...
By Kirby LaCour

Inclusion, is it as good as it sounds?

Since, Hannah began education in public school we have maintained that she be part of an inclusive educational setting. There are many aspects to inclusion, but I will make a few points from our perspective and how it benefits Hannah.
Social and behavioral benefits. Most of our children with and without Down syndrome learn from what they observe. How to act in a classroom and perform school tasks can be learned from typical classmates and allows our child to behave in a similar fashion. This keeps Hannah from feeling different or left out. She may see good and bad behavior and performance, but she also learns what is acceptable at the same time. She can be corrected just like the others and accept the gratification of a good job as they do.
Acceptance. Many of us wonder how other children will perceive our child with Down syndrome. If our child with DS is part of general education class and treated as such then other children will perceive our child as one of their peers, equally. From what we have seen the other children are not misinformed and are educated about the similarities and do not focus on the differences. This yields a non-stereotyping environment.
Education. If our child with Down syndrome is kept strictly in a special education class, he/she will not be challenged and let’s face it, they will be treated like a second class citizen. She will begin to behave and learn on a special education level. Giving our child the means to learn on the same level as other typical children broadens her horizons and learning ability.
Keeping our child in an inclusive setting in education and extra-curricular activities is necessary to enhance her development--mentally, socially and behaviorally. She can do and enjoy what all the typical kids are doing. Isn’t that the main objective? It is at Our House!

Take care,
Kirby Joe

Page 9
Emma Ryan,
Another one of the girls.
By The Ryan family

“Just because Emma has Down syndrome does not mean that we are better than her. Emma has a lot in common with everyone.”

I would say that Catie has a pretty good grasp on things for an eight year old. As Emma's big sister, she couldn't be more patient and helpful. In her own way, Grace, who is only five, gets it too. She knows things are a little different with Emma, but above all she's Emma’s big sister and that's what Emma needs the most. Olivia, the baby, is just that. She and Emma are becoming good friends. They play and laugh and fight - just like all sisters do.
When Emma entered our world and found her place in our lives, I realize now that of all the emotions we experienced in the first few days, there was one emotion that we felt above all. Love. Love for Emma. Love for each other. Love for all our little girls. Love for our parents and brothers and sisters and friends who supported us when we needed them most. Emma brought us together in a very special way and brought an unbelievable amount of love into this world. By being who she is, Emma has unknowingly taught us all a thing or two about patience and kindness, tolerance and compassion. And love. What more could we ask for? (A boy? I don’t think so....)

Parents now have 2 years to exercise their due process rights after they knew or should have known an IDEA violation occurred. “The interpretation of the language "should have known" will be critical.”

7. IEP team transition. Parents of a child transitioning from Part C services (early childhood) to part B services (school-age) can request an invitation to the initial IEP meeting be sent to representatives of the Part C system to assist with a smooth transition of services. This provision doesn't require a Part C representative to attend but it does encourage collaboration.
8. Transfers between school districts. Services comparable to those described in the IEP in effect before a child's transfer must be provided by the new school district. These services must continue until the previous IEP is adopted, or a new IEP is developed, adopted and implemented, in the case of a transfer in the same state or until a new IEP is developed, in the case of a transfer outside the state. This new provision will help parents of transferring students know what they can expect from their new schools.

DUE PROCESS
1. Procedural safeguards notice. The procedural safeguards notice will be distributed only once a year except that a copy will be distributed upon initial referral, when a parent makes a request for an evaluation, when a due process complaint has been filed or if a parent requests a copy. The notice will no longer be automatically distributed with the IEP team notice or upon reevaluation. This is only a problem if parents are unaware of their rights, including the right to request this notice if they need one.
2. Statute of limitations. Parents now have two years in which to exercise their due process rights after they knew or should have known that an IDEA violation has occurred. The interpretation of the language "should have known" will be critical.
3. Due process complaint notice. Parents who feel their child's educational rights are being compromised must file a complaint with the school district (with a copy to the state) identifying the name and contact information of the child,

“The right to "stay put" while a parent
challenges the manifestation determination or proposed placement is a critical element to ensuring a student's continued free appropriate public education in the least restrictive environment.”

DISCIPLINE
1. Stay put. The right of a student with a disability to "stay put" in his/her current educational placement pending an appeal is eliminated for alleged violations of the school code that may result in a removal from the student's current educational placement for more than 10 days. Previously the... Continued, p.11.

“...for purposes of reporting Adequate Yearly Progress under the No Child Left Behind Act, ...schools do not have to count children who are transferred to alternative settings.... This could create an incentive for disciplinary actions against students with disabilities.”

Moving back and forth between the current placement and an interim alternative educational setting during an appeal can have a significant negative impact on achievement for children who already have difficulty adjusting to transitions. Parents must remain vigilant and ensure that their children continue to be provided the educational programming and services they need to make progress toward meeting their IEP goals. If this progress is negatively affected, the school may recommend a change to a more restrictive setting for the future. In addition, for purposes of reporting Adequate Yearly Progress under the No Child Left Behind Act, individual schools do not have to count children who are transferred to alternative settings and are, therefore, not in the same school for the full academic year. This could create an incentive for disciplinary actions against students with disabilities.
2. Services to be received in interim alternative educational setting. A child is entitled to receive programming and services necessary to enable him or her to receive a free appropriate public education consistent with section 612(a)(1) during the period in which he/she is in an interim alternative education setting. Under IDEA 2004, the student must be provided services to enable him or her to continue to participate in the general education curriculum and to progress toward meeting the goals in the IEP. The new provision replaced language requiring that a child in an interim alternative educational setting receive services and modifications, including those described in the student's current IEP which will enable the child to meet the goals in the IEP. The change in language cannot be interpreted as diluting any of these services that are consistent with the definition of FAPE because a student with a disability must continue to receive FAPE during the period of removal from his/her current educational placement.
3. Manifestation Determination Review. Before IDEA

“The burden of proof for the manifestation determination review has now been shifted to the parents who have to prove that the behavior was caused by or had a direct and substantial relationship to the disability.”

4. Special Circumstances. Since 1997, IDEA had expressly authorized schools to unilaterally remove children to an interim alternative educational setting for as long as 45 days for offenses involving drugs and weapons -even if the behavior was a manifestation of the student's disability. In addition, a hearing officer could make the same decision if it was determined based on a preponderance of the evidence that keeping the child in his/her current placement was substantially likely to result in injury to the child or others. Although school authorities have always had the authority to respond to an emergency and to unilaterally remove any student with or without a disability who is causing serious bodily injury to another, now schools can also unilaterally remove children for 45 days for "inflicting serious bodily injury." This term is defined as involving a substantial risk of death; extreme physical pain; protracted and obvious disfigurement; or protracted loss or impairment of the function of a bodily member, organ, or mental faculty.

Continued, p.12.

By now, most of you know my son, Craig Blackburn. Over the past year I have had a revelation! My role as Craig’s advocate has taken a backseat to his ability to self-advocate. This was especially clear to me after the “Partnering for a Lifetime of Success” conference in Alexandria at which Craig was invited to speak.
Kirby Joe LaCour has been working with Craig for over a year on effective public speaking and presentation skills. Ken and I listened to several speeches many times and saw the improvement that Craig was making under Kirby’s guidance. We truly believed that Craig was doing a really good job and we prayed that an audience would feel the same way.
Craig had the opportunity, leading up to the 2004 Buddy Walk, to speak to several groups about the event. Each time Craig spoke to these groups, we were awed at how attentive and respectful the audiences were. It really was amazing!
In November 2004, Craig gave his first major speech to a large audience in Alexandria. There were approximately 250-300 parents, professionals and educators in attendance. The room was large and the stage was raised. I have to admit, when we entered the room, we were overwhelmed.
We were so excited to hear that Dr. Yvonne Adler, Executive Director of Special Education and Student and Community Services in St. Charles Parish was going to introduce Craig. This was special for our family because we consider Dr. Adler a friend who has been there with us through Craig’s entire school experience. We were not, however, prepared for the kind and honest words that Dr. Adler would express. After so many years of struggling and negotiating with the school system, we finally had closure when we heard Dr. Adler verbalize that, as parents, we had done the right thing. In our hearts, we knew we were right in helping Craig choose a direction, but to have such an educated and highly respected professional say it was the ultimate confirmation for us. As I sat there and listened, the memories flooded back. Her words left me in tears.
Craig appeared to be very calm as he stepped onto the stage and thanked Dr. Adler for her words. We are always proud of Craig for the person he is, but I must say, on that day, our hearts were especially bursting with pride. His presentation was genuine and sincere and throughout, his personality radiated because he was not just speaking words, but was delivering a message from his heart. He recalled incidents in his life and told about what it had taken for him to get to where he is.
I knew that day, that no matter how hard we tried or what message we delivered, it would never be as powerful as Craig’s message because we had not walked in his shoes. It’s true, we walked beside him and, at times, even carried him, but ultimately, it was he who persevered. During the speech, there were applause, laughter and tears, but shining through it all…..there was hope. The same hope I needed when Craig was so young and I was so uncertain about the future.
The transformation occurred right before my eyes. When I looked at the podium in Alexandria, I saw a man. As a mom, there will always be flashbacks and reminders of the little round blond haired boy, but I feel confident now that Craig is taking the lead and it is I that am following! What a great feeling and what better position in life for me to hold than being Craig’s mom!

“...school personnel can consider any unique circumstances on a case-by-case basis when determining whether to change the placement of a child with a disability who violates a school code of conduct. This is a good provision for parents to quote when they are having trouble proving that their child's behavior is a manifestation of the disability.”

6. Functional Behavioral Assessments. The requirement for Functional Behavioral Assessments and Behavioral Intervention Plans are maintained in the discipline provisions
7. Case-by-case determination. A paragraph has been added to the discipline provisions, which states that school personnel can consider any unique circumstances on a case-by-case basis when determining whether to change the placement of a child with a disability who violates a school code of conduct. This is a good provision for parents to quote when they are having trouble proving that their child's behavior is a manifestation of the disability. It serves to remind the school personnel that common sense should prevail and all circumstances should be considered.

If you have questions or comments about this update, contact Ricki Sabia at rsabia@ndss.org. If you or others you know would like to be added to the NDSS mailing list, send name(s) and email address to info@ndss.org. National Down Syndrome Society, 666 Broadway, New York, NY 10012, Phone: 800-221-4602; Fax: 212-979-2873; e-mail: info@ndss.org; Web site: http://www.ndss.org

CALLING ALL SIBS...
WE NEED YOU!!!

Siblings...we want your stories, poetry, etc.... Tell us about you, tell us about your brother or sister with a disability and your other siblings, tell us about your family.
DSAGNO News is preparing an issue to be entirely devoted to the amazing siblings of people with disabilities. Send your submission to
DSAGNO
P.O. Box 55204, Metairie, Louisiana 70047
Or via email to kscallan@dsagno.org.

Parent Tips
The following parent tips came from the recent LaSIG (Louisiana School Improvement Grant) Leadership Academy held in St. Charles Parish.

1. At the beginning of each school year, to help teachers and therapists get to know your child, send a notebook with photos and information about your child.
2. Include in your notebook, a list of books in your personal library on topics pertaining to issues your child faces. Offer the use of your library to help them better understand these issues.
3. Purchase videos about an aspect of your child’s care or their disability and loan it to the school each year. Remind teachers to pass it around.
4. Send a monthly “newsletter” about your child written by both you and your child to their teachers and other professionals. Getting a child’s point of view is often very insightful to teachers and it helps your child develop writing skills.
5. Don’t assume your child’s teacher knows about your child’s disability. Even special education teachers are not taught specifics about different disabilities. Communicate often with them and don’t hesitate to answer any questions they have which may help them and ultimately, your child.

GOVERNOR BLANCO PROMISES CONTINUED ATTENTION TO COMMENTS ON HEALTH CARE REFORM

In a recent LaCAN mailing, Governor Blanco’s column for November again reinforced her commitment to reform of the state of health care in Louisiana. In order to make the tough reforms necessary a reality, Governor Blanco is focusing on five specific areas: improving administrative efficiencies, improving health outcomes, caring for the uninsured, balancing long-term care options and reducing fraud and abuse.
In her column, the Governor promised that “Reform will not end with one legislative session or a couple of administrative changes. ....We will continue to listen to consumers and service providers.” Visit the governor’s web site monthly for updates on the progress of health care reform in Louisiana at www.gov.louisiana.gov/

DSAGNO MEMBERSHIP DRIVE

IF YOU HAVEN’T ALREADY DONE SO, PLEASE SEND IN YOUR MEMBERSHIP RENEWAL TODAY...
....................

OCHSNER HOSPITAL OFFERS FREE CAR SEAT SAFETY CHECKS

Schedule an appointment for your FREE car seat safety check at one of 3 area Ochsner Clinic locations. Four certified technicians will be on hand to see to it that your child’s car seat is installed properly..

Safety checks are available at Ochsner for Children’s Destrehan office, 1970 Ormond Blvd., Suite J, Destrehan, La. their Metairie Office, located at, 4901 Veterans Blvd. Metairie, La., and their Rothschild office on Veterans Blvd..

CALL (504) 842-S-E-A-T (7328) TODAY FOR YOUR APPOINTMENT.

WEBSITES

Wrightslaw
Up-to-date information about special education law and
advocacy for children with disabilities for parents, advocates, educators, and attorneys.
www.wrightslaw.com

League of Special Education Voters
www.SpEdVoters.org

The Arc Legislative Action Center
Excellent site. Provides issues and updates, action alerts, contact info for local, state and national officials.
http://capwiz.com/thearc/home/

Send in your comments on IDEA...

The National Down Syndrome Society recommends parents send letters in support of NDSS’s comments regarding IDEA regulations to make life easier and because the Dept. of Education generally pays more attention to large organizations; however, if you have specific comments, do not hesitate to send them. Be sure to include who you are (parent, teacher, student, service provider, administrator, etc.) and be as specific as possible.

Snail mail:
Office of Special Education and Rehabilitative Services, U.S. Department of
Education, 400 Maryland Avenue, SW., Potomac Center Plaza, room 5126,
Washington, DC 20202-2641.

Email:
comments@ed.gov
Must include the term “Comments on IDEA-2004'' in the subject
line.

Coming Soon...

Questionnaire...give us your comments at the February 18, 2005 General Membership meeting. We want to know what you want to see in our newsletter. Look for an upcoming issue devoted to SIBS – those wonderful, loving, caring brothers and sisters that teach their friends about what it’s like to have a brother or sister with Down syndrome, worry over their siblings, learn how to help their siblings work on their therapy and who are fantastic people. Send in your Sib articles, thoughts, poetry to kscallan@dsagno.org today.