For those who follow: sharing stories to make the journey easier

Ending the journey

2009-12-04T20:08:00.002-05:00

We started this year blog approximately a year ago in answer to a request for information sharing. We hope that many of you have found the information and support you were seeking here. However, as mothers of children with disabilities, who also work, we are finding it difficult to update this blog on a regular basis-which is probably why not many blogs like this exist. We hope to check the links periodically to make sure they are still valid, but if we miss one, please drop us a note.

We plan to keep the blog "live" so it can be of help to future families. If you are seeking information, you can click a tag to the left, or use the search feature to look for specifics.

There are also several agencies you can contact for help:

You can contact ASK for more information on health care financing. The Arc of Indiana has family advocates that can help you apply for Medicaid waivers and other services. You can seek assistance with special education issues with IN*Source.

We wish you, and your family, the very best.

Outreach fact sheet library

2009-11-23T16:48:00.001-05:00

As a service for persons supporting individuals with intellectual/developmental disabilities, Outreach and the Indiana Institute on Disability and Community developed the Outreach Fact Sheet Library. The information provided is designed to enhance the understanding of the topic and does not replace other professional or medical instructions or individually developed plans. Please check back here for more fact sheets and information.

As new fact sheets are created, they will posted here: http://www.in.gov/fssa/ddrs/3948.htm

Finding Healthcare in Indiana

2009-11-22T14:48:00.001-05:00

Are you uninsured? You are not alone. Millions of Americans have no health

coverage. Some lost their insurance when they lost their jobs. Others work hard,

but their jobs don’t provide health insurance benefits. Whatever the reason,

finding health coverage can be difficult. If you are looking for coverage, this

guide can help you find the coverage you need.

The road to finding health coverage depends on where you start. Everyone

has different circumstances. Starting with number 1, find the question that best describes your

situation.

Start here:

1. Did you recently lose your health insurance because you lost your job?

2. Did you recently lose your job because of trade policy—for example, increased

imports or jobs moving overseas?

3. Are you an early retiree who has lost your health coverage?

4. Could you be eligible for Medicaid, the Children’s Health Insurance Program

(CHIP), or other government programs?

5. Do you have a serious medical condition or a disability?

If options 1-5 don’t work, try these:

6. What do you need to know about buying insurance on your own?

7. Where can you find help if you can’t find coverage?

find the answers here:

http://www.familiesusa.org/assets/pdfs/guides-to-finding-insurance-2009/indiana

Tips for Building Self Determination

2009-11-22T14:33:00.000-05:00

Making Choices

􀂊 If you have a disability, learn about it.

􀂊 Find your strengths, interests, and think creatively about learning styles and methods.

􀂊 Have high expectations for yourself.

􀂊 Explore new activities; find positive, fun things to do with your friends. Learn from your

mistakes.

􀂊 Have a say in things that are about you.

􀂊 Be open minded and listen to what people you trust have to say.

Self Advocacy

􀂊 Speak up.

􀂊 Take on a leadership role in something you are good at.

􀂊 Don’t be afraid to ask for help.

􀂊 Learn to talk about your disability. Help others to understand you and your needs.

􀂊 Work on creating open, nonjudgmental relationships.

Exploring the Possibilities

􀂊 Try to learn something new every day.

􀂊 Volunteer in something that interests you; find new hobbies.

􀂊 Find adult mentors who understand and relate to you.

􀂊 Talk about your future.

Strong Self-Esteem

􀂊 Write your thoughts down; describe yourself and your life.

􀂊 Take steps to feel part of your community; get involved by volunteering.

􀂊 Use your talents.

􀂊 Involve yourself in healthy, caring relationships.

􀂊 Surround yourself with people who are positive; find someone you look up to be your mentor.

Goals & Plans

􀂊 Understand what a goal is and why they are important.

􀂊 Think about what you want to do with your life, discuss this and other interests you have with

people who are important to you.

􀂊 Make a list of your goals and the steps you need to take in order to reach them.

􀂊 Be flexible and realistic about your goals.

Understand Reasonable Risks

􀂊 Think about all of the benefits and consequences before you take action.

􀂊 Know your support network; those people who will be there for you unconditionally.

􀂊 Seek advice from others but keep in mind that sometimes the truth is not easy to hear.

􀂊 Mistakes are normal and an important part of learning.

Problem Solve

􀂊 Learn to take ownership of challenges.

􀂊 Accept the idea that problems are part of healthy development.

􀂊 Create a list of positives and negatives to help you make good decisions.

􀂊 Get advice from people you trust.

Adapted from the NCSET Research to Practice Brief

INDATA blog

2009-11-15T13:58:00.001-05:00

INDATA this, INDATA that. What exactly is INDATA anyway?

: Assistive Technology Lab

Let’s catch up a bit. INDATA stands for the Indiana Assistive Technology Act. Its goal is to spread the word about assistive technology and make it readily available for Indiana residents with disabilities. Here are the services we offer:

Device Demonstration Set up an appointment to learn how to use assistive technology devices.
Device Loan Borrow equipment for up to three months to help you decide if you could use it. Follow these easy steps to set up an account and browse the various devices available for loan.
Equipment from Assistive Technology Lab
Training Quarterly assistive technology trainings and annual assistive technology conference held at the convention center in Indianapolis.
Equipment ReutilizationDonate old equipment including wheelchairs, walkers, canes, crutches and other mobility related devices to Easter Seals Crossroads as it prepares for an upcoming equipment exchange program.
Reutilized Computer Program We repair and refresh donated computers and give them to people with disabilities that have no means to purchase one on their own.
AT Hour This one-hour presentation informs your group about the assistive technology programs and services provided by the INDATAProject and includes an exciting “show and tell” of various assistive technology equipment.
Information and Referral Questions about assistive technology? You can call our Information & Referral/Funding Specialist to learn more about available services and funding options.

We’re a friendly bunch here at the INDATA project, and we’re here to provide you with assistive technology solutions. Questions or comments? Stop by anytime at http://www.eastersealstech.com!

follow the blog here: http://blog.eastersealstech.com/

Real Work. Real Stories

2009-11-14T10:34:00.000-05:00

This site highlights the employment successes of people with Intellectual Disabilities/Developmental Disabilities (ID/DD) who are working in paid jobs in their communities. Through the use of innovative, front-line employment support practices, these individuals are earning money, forming networks, and contributing to their communities. Learn more about these people and the promising practices that led to their success.

Scroll down this page for current featured stories, or use the menu at left to browse all stories by category.

http://realworkstories.org/

Turning a Nintendo DS into an AAC device

2009-11-10T16:15:00.001-05:00

Two Ways to Make Nintendo DS an AAC Device

by K

DS Talker is an older free program by the people who bring us the Sclera Symbol set that runs on a Nintendo DS. Tap to Talk is a newer program for the Nintendo DSi or DS Lite that retails for a subscription of $99.95 a year. Both program are dynamic display.

As it is free you will need to do some work to get the DS Talker working. The program is in German, but the English manual explains in detail how to make it work in English. (Although a techie friend or gamer 17 year old is likely to make it work the fastest.) The program uses the free white on black Sclera Pictos.

Tap To Talk include the software for the DSi or DSLite and a web based application to program boards as well as clipart symbols. Other symbol sets can be used if converted to .bmp format. You can play with the application before you buy it with an online emulator.

Having played with DS Talker and watched the Tap to Talk videos the programs see to run in nearly identical ways.

FAQ about AT

2009-11-09T10:31:00.000-05:00

from LDonline

1) I am looking for assistive technology for my child who has learning disabilities and social skill deficits.

We suggest that you ask your child’s teachers, medical doctor/specialists, and the school’s technology specialist for assistive technology suggestions. Once these suggestions have been made, it is important to incorporate them into your child’s IEP. Here is an additional source of information on assistive technology:

Technology: Some Common Questions Answered

Also, see the assistive technology section in LD OnLine’s In Depth areas.

2) I was told that my child would benefit from using certain types of equipment in the classroom, such as noise reducing headphones. Where can I find these products?

Specialists such as an occupational therapist, physical therapist, or special education teacher will have access to assistive devices and would most likely have good catalogs or other resources for you to look through. It is likely that the occupational therapy or physical therapy departments in your school district would allow your son to borrow such products to make sure they are helpful to him before you order them. If these accommodations are written in his IEP, then the school district should supply him with what he needs during the school day.

3) Would a handheld organizer, like a Palm Pilot, be helpful in keeping a student with ADHD organized?

There are many tools which can help your child stay organized. A handheld organizer may work, but even simpler things, like a day planner, may work just as well. The key to organizational help is to select something that the student and her family and teachers can all use and adopt quickly. The following articles and websites can help you in determining the best tools for your child.

The articles below include information on how students use forms of assistive technology, like handheld organizers.

Assistive Technology Assessment: More Than the Device
Success Stories from Parents and Students (Beach Center on Disability)

If you do choose a technology device, test out a variety of products in order to find a good match. Many companies offer free demos or 30-day-trials; if you ask, they can even cover shipping and handling costs. Take advantage of these options as much as possible and you'll have a better sense of what works for you and your child.

4) Are there any grants or scholarships available for students in need of expensive assistive technology?

There are a number of organizations that provide assistance to people with disabilities, including providing financial support. Below are three suggestions for organizations that help students obtain access to personal computers.

The Jim Mullen Foundation and Computers for Schools provide low-cost computers for people who have a disability in the US and Canada.
Disability Resources provides general information on funding assistive technology. In addition, the site lists contacts for every state's Technology Assistance (TA) project.
The Alliance for Technology Access (ATA) is the national network of community-based Resource Centers, Developers, Vendors, and Associates dedicated to providing information and support services to children and adults with disabilities.
The Family Center on Technology Disability is a resource designed to support organizations and programs that work with families of children and youth with disabilities.

5) What are some of the best and most commonly used technologies for students with learning disabilities?

Below are some suggestions for websites that identify the best technologies and provide access to current information on new tools. Many of the following sites sort, rank, and review AT for various learning disabilities.

Additionally, the Center for Implementing Technology in Education (CITEd) and the National Center for Technology Innovation (NCTI) developed two searchable databases that present evidence and products for the use of technologies that support the instruction of reading and mathematics for students with special needs.

The following link can take you to those matrices.

Technology Matrix

6) I am looking for written resources or computer programs to use in my classroom to help teach my students with math disabilities. Do you have any recommendations?

There are many technology tools to choose from today, and more are constantly being developed. We have provided a few suggestions below for websites that identify programs and help teachers obtain access to current information. Test out a variety of products to find a good match. Many companies offer free demos or 30-day-trials; if you ask, they can even cover shipping and handling costs. Take advantage of these options as much as possible and you'll have a better sense of what works for you and your students.

7) Can my son receive modifications and use assistive technology during the SAT?

ETS, the publisher of the SAT, offers many options for its test-takers, but the process for getting approval takes seven weeks at the minimum. In most cases, the evaluation and diagnostic testing documentation needs to have been completed within 5 years of the request for modifications.

Your child may request to use AT for his documented disability. Note that there are no additional fees for any testing modifications.

For more information on the documentation criteria, please visitServices for Students with Disabilities (College Board). You can also contact ETS Disability Services directly at 1-866-387-8602.

Also, there are several online practice sites where your child can gain practice and familiarity with the computer-based test format. Check out the practice sections and tests at:

Special thanks to our partners at National Center for Technology Innovation (NCTI) and Center for Integrating Technology in Education (CITEd) for contributing much of the content for our technology section.

Resource for integrating AT in the classroom

2009-11-01T10:28:00.001-05:00

Linda Burkhart's website, Simplified Technology provides a wealth of great tips, resources and websites to help simplify technology use in your classroom.
Click on the link to get started: http://lburkhart.com

from http://www.assistivetechnology.vcu.edu/

New UDL resources

2009-11-01T10:24:00.003-05:00

It's easier than ever to learn about Universal Design for Learning (UDL).
Check these out -

1. A new Universal Design for Learning YouTube Channel

2. Two online instructional modules about UDL available here and described here:

These two online modules introduce the theory, principles and application of Universal Design for Learning (UDL) to teacher candidates and in-service teachers. They provide higher education faculty with a multimedia, interactive online-learning environment that can be embedded in instructional methods courses. They are designed to be flexible enough to be used as part of an online, hybrid or face-to-face course.

and

Here's a great location to review that will share some best practices in demonstrating UDL in action. The UDL Spotlight was a new feature in the recently released National UDL Center. Educators and practitioners from around the country share their stories of infusing UDL. Worth a peek!
http://udlspotlight.wordpress.com/

from http://teachingeverystudent.blogspot.com/ and http://www.assistivetechnology.vcu.edu/

Intro to Special Ed in Indiana

2009-10-26T18:42:00.001-04:00

The Indiana Institute’s Early Childhood Center is pleased to announce a new publication available at no charge to parents of children with disabilities. An Introduction to Special Education in Indiana was written for parents who are new to the special education system. It includes an overview of special education law, and sections on the referral, educational evaluation, and case conference and IEP processes. It also includes tips, suggestions, explanations, and a list of resources, including a glossary of “Words and Terms to Know.” This booklet combines 3 previous special education booklets and has been revised and updated to reflect changes made in Indiana’s special education law, Article 7.

Parents can order a copy of this booklet by emailing Cathy Beard at beardc@indiana.edu or they can fax a request to (812) 855-9630 or call toll free 1-800-825-4733.

Halloween tips for children with autism

2009-10-24T20:03:00.002-04:00

By Lisa Jo Rudy, About.com

Many children on the autism spectrum look forward to Halloween. It's a time when they can dress up as their favorite character and (at least in some homes) eat piles of candy. But Halloween can be stressful and demanding for kids on the spectrum. Follow these tips to prepare for a pleasant, positive Halloween experience.

Here's How:

1. Use videos and books to prepare your child for Halloween expectations. There are many Halloween options out there, so choose the ones that are most like your own real-life situation.

2. Together, decide what costume your child will choose. Take into account not only his or her preferences, but also sensory concerns. For example, a Spiderman costume may include a full mask - which can become overwhelming. Some children love face paint, but others can't take the sticky sensation.

3. Make a plan that you can stick to. Choose a time to leave the house, plan a path, and know what will happen when you come home (can he dump the candy on the floor? What may he or she eat? If the candy is not a good choice, what substitute treat will she get?).

4. Keep it simple. Knowing your child, what's reasonable to expect? If he can handle just one house, that's fine. Know that, even when you see other kids running up and down the street, it may not be the right choice for your child.

5. Create a social picture story. Use digital photos, images from the web, or other sources to show and tell exactly what your child will do. Include all the steps, not forgetting that he must knock at the door, say "Trick or Treat!" and "Thank You!"

6. Read the social story together, not once but as often as possible. From time to time, toss in a clinker: ask - "what if no one is home?" Help her understand that it's ok to skip a house, to take a piece of candy from a basket (if that's ok with you), and so forth.

7. Practice, practice, practice! Put on the costume many times before the Big Night, and work out any kinks. Role play the entire treat or treat scenario as often as you can.

8. Act out a number of scenarios so your child has a small repertoire of possible responses. For example, what should she say when someone says "You look beautiful (or scary or creepy)!" What if you don't like the treat that's offered? What if you meet kids you know?

9. Scope out the neighborhood ahead of time. Do you see any decorations that might upset your child? Flashing lights that might trigger sensory reactions? If so, consider skipping that house (or visiting ahead of time) to avoid melt-downs.

10. Consider recruiting peer support. If your child with autism has no siblings (or his siblings have other plans), consider recruiting another typical peer to go house-to-house with you. Explain to that child and his parents that he will be helping your child to understand Halloween a little better. You may be surprised at how helpful another child can be!

11. On the big night, remember to be flexible. If your well-prepared child suddenly rebels against his costume, consider letting him go in just a silly hat. Remember that Halloween is for fun - and it really doesn't matter what he wears or how many homes he visits.

12. Take pictures. Get excited. Have fun! Even if you're only going to one house, make it an event. When you're done, put together a memory book that can help you prepare for next year.

Transition Resources at NICHCY

2009-10-21T20:21:00.001-04:00

Life is full of transitions, and one of the more remarkable ones occurs when we get ready to leave high school and go out in the world as young adults. When the student has a disability, it's especially helpful to plan ahead for that transition. In fact, IDEA requires it.
A Quick Summary of Transition
- Transition planning takes place as part of developing the student's Individualized Education Program (IEP).
- The IEP team (which includes the student and the parents) develops the transition plan.
- The student must be invited to any IEP meeting where postsecondary goals and transition services needed to reach those goals will be considered.
- In transition planning, the IEP team considers areas such as postsecondary education or vocational training, employment, independent living, and community participation.
- Transition services must be a coordinated set of activities oriented toward producing results.
- Transition services are based on the student's needs and must take into account his or her preferences and interests.
Begin at the main transition page, Transition to Adulthood, for a quick summary of transition or the much more indepth The Details!
http://www.nichcy.org/EducateChildren/transition_adulthood/Pages/Default.aspx
Transition "Starters" for Everyone connects you with beginning links to transition resources, divided into resources for general audiences, for parents, for professionals, and for students.
http://cms.nichcy.org/EducateChildren/transition_adulthood/Pages/basics.aspx
Transition Goals in the IEP | It's more involved than you think.
http://www.nichcy.org/EducateChildren/transition_adulthood/Pages/iep.aspx
Students Get Involved! | Come here if you're looking for resources about involving students in transition planning, person-centered planning tools, or materials and connections made just for students themselves.
http://www.nichcy.org/EducateChildren/transition_adulthood/Pages/student-involvement.aspx
Adult Services: What are they? Where are they? | Representatives of outside agencies may be invited to the IEP transition-planning table. Find out who.
http://www.nichcy.org/EducateChildren/transition_adulthood/Pages/adultservices.aspx
Education/Training Connections | This resource page will connect IEP teams with organizations and articles that can help team members tackle planning for the student's education or training after high school.
http://www.nichcy.org/EducateChildren/transition_adulthood/Pages/education.aspx
Employment Connections | Connect with resources in the employment world. Exploring what these organizations and centers have to offer can be extremely helpful when involved in planning your student's future in this area.
http://www.nichcy.org/EducateChildren/transition_adulthood/Pages/employment.aspx
Independent Living Connections | And guess what type of resources this page connects you with?
http://www.nichcy.org/EducateChildren/transition_adulthood/pages/independent-living.aspx

RTI in Indiana

2009-10-17T13:28:00.000-04:00

The Core Components of RTI: A Closer Look at Leadership, Parent Involvement, and Cultural Responsivity, is the last in a three-part series on Response to Intervention (RTI) in Indiana.

The first report discussed the research and policy impetus for the use of the RTI framework, as well as what the state of Indiana is currently doing to support this new initiative. The Indiana Department of Education
has devised a framework of RTI that addresses six core components on which to focus:

evidence-based curriculum, instruction, intervention, and extension;
assessment and progress monitoring;
data-based decision making;
leadership;
family, school, and community partnerships; and
cultural responsivity.

The second report in the series looks closely at the first three core components. This third report examines the last three components of the RTI framework.

Click HERE to view the new report in PDF format.

Click HERE to view the first report on RTI, and HERE to view the second report in this series.

Transportation

2009-10-15T16:15:00.003-04:00

We had an inquiry on the blog for an FAQ regarding transit time for a child with a disability on a bus. There is a previous post regarding transportation dated August 6. You can always search this blog using the tags or the search box in the left hand navigation links.

However, we did not cite the actual language in Article 7 in the last post, so here it is:

Whenever the transit time of a student with a disability exceeds the transit time of nondisabled

students of comparable age in the same school corporation or charter school, the school corporation of legal settlement or charter school shall place a written student-specific justification for the excess transit time in each affected student's record. A local policy limiting transit time is applicable to students with disabilities.

If you are discussing this at a case conference and the school refuses to shorten the bus ride time, you should request Prior Written Notice-requiring the school to put in writing why the transit time can not be shortened.

Since it is already outlined in the law, you could also consider filing a complaint with the DOE. You can do that online here.

You can always contact IN*SOURCE with questions related to special education law.

Preventing the flu

2009-10-12T16:43:00.001-04:00

It has been broadly noted that of the 36 child deaths from H1N1 67% (this is about 9% higher than the yearly seasonal flu) had a high risk medical condition and 92% of those with a high risk medical condition were children with neurodevelopmental conditions.Of the 02% who had a neurodevelopmental condition 59% had multiple neurodevelopmental disabilities and 41% had chronic pulmonary problems. Many of these children also had a hospital accquired infection like MRSA when they died. (From The Surveillance of Pediatric Deaths Associated with the 2009 H1N1 Epidemic by the CDC.)

What this means is that our students with severe and multiple disabilities are at very high risk should they become infected with the H1N1 flu, or really any influenza infection. Already some strains of the virus are resistant to anti-viral medication, so prevention is our number on weapon. We as teachers, working with our supervisors and program or classroom nurses are at the forefront of ensuring that our students do not become infected with any strain of flu virus, including H1N1 at school.

Popout

Prevention Guidelines (from the CDC)

If you are ill, stay home until fever is gone without medication for 24 hours
If students are sick they should be required to stay home until temperature is normal for 24 hours without medication
Frequently wash your hands with soap and water and assist students with hand washing following hand washing guidelines (warm water, use soap, rub for twenty seconds, etc.)
If soap and water is not available use an alcohol based sanitizer frequently (rub until dry)
Wash/sanitize all the areas of your hands palms, backs, between fingers, fingertips, thumb & wrist, nails
Avoid touching eyes, nose and mouth and wash hands after touching face
When coughing or sneezing over mouth/nose with a tissue and dispose of immediately in waste basket, then wash hands
H1N1 can survive 2-8 hours on surfaces, decontamination can be done using heat 167-212°F, chlorine (bleach), hydrogen peroxide, detergents (soap), iodophors (iodine-based antiseptics), and alcohol (such as alcohol based cleaners/sanitizers)
Surfaces like phones, keyboards, and doorknobs (not to mention switches) should be cleaned with alcohol wipes or anti-flu cleaning wipe often
Clothes and linens can be washed with other items using regular laundry detergent and tumbled dry on high heat, care should be taken not to "hug" the dirty laundry to you before washing and wash hands after handling dirty laundry
Eating utensils should be washed in a dish washer or by hand using soap and water
For the record you cannot catch H1N1 from eating pork or pork products

Basically - wash your hands, wash the kids hands, stay home if you are sick and send the kids home if they are sick and require they stay there!

H1N1 Symptoms (from the CDC)

fever
cough
sore throat
runny or stuffy nose
body aches
headache
chills
fatigue
some people may have vomiting and diarrhea

The Learning Program

2009-10-11T15:57:00.002-04:00

While the program featured here is targeting the Down Syndrome population, it may be used with any disability that might benefit from the program. Many families look for ways to supplement the school's literacy and numeracy programs and/or are homeschooling their children. This resource might provide some guidance and materials to do so. You must create a free account to access the materials: http://www.dsfoc.org/learning_program_registration.php

Why

The Learning Program was created to bridge the gap between research and practice. Although researchers continue to discover more about how people with Down syndrome learn, their insight has been slow to filter to parents and teachers. The program focuses on parents as first-teachers for their children, bringing the fruits of research into practice. Knowledgeable parents can work more effectively with their children and give them a jump-start on education. The program also arms parents to serve as capable advocates for their children in the educational process.

The Learning Program is designed to supplement traditional education. Despite some wonderful teachers, traditional education too often fails children with Down syndrome due to poor educational placement, lack of trained assistants and outdated stereotypes. Through this program, we hope to strengthen the educational potential for children with Down syndrome, irrespective of their formal educational setting. The Learning Program section of this website enables parents and teachers to access informational guides, download materials and follow links to reliable information about best practices for instruction.

What

The Learning Program complements formal instruction in literacy and math. It also has occupational and speech therapy components. DSF has partnered with educators, researchers, therapists and administrators to develop a program that uses effective teaching strategies and customized materials to support parents, teachers and children in the educational process.

Literacy Materials include Instructional Materials, DSF Sight Word readers (books and worksheets), Lakeshore Emergent Readers (worksheets), and alphabet and phonics worksheets.

Math Materials are aimed at prenumber and early number concepts (Introduction to Numbers) and progress toaddition and subtraction as well as time and money concepts.

Daily Activity Guides are documents that we provide to parents monthly and serve as a list of suggested activities.

Speak Up: your guide to self advocacy

2009-10-08T15:26:00.003-04:00

No One Knows You Better Than Yourself

There are lots of experts to help people with developmental disabilities succeed. But the best expert, and the most consistent one, is often found within. After all, no one knows you better than yourself.

Whether you’ve got the words to express yourself or are reliant on actions alone or others to interpret, Ari Ne’eman, president of the Autistic Self-Advocacy Network, shares the tools to turn anyone into a self-advocate.

It’s easier than you think. Start small, advises Ne’eman, who is on the autism spectrum himself. The key is to make yourself heard however you can.

“When other people make decisions for you without you, the decisions that are made often don’t fit your needs,” Ne’eman says. “Self-advocacy helps people get the outcomes that they desire and it becomes necessary — as a person grows from a child to an adult — in order to succeed in this world.”

The Time Is Now

Whether you’re in formal discussions with a lawmaker or simply telling mom that you’re sick of peanut butter and jelly, self-advocacy is the very basic idea of asserting yourself.

“You are the person with the most at stake and thus the person who should have the most control over your own life,” Ne’eman says.

Remember that old phrase today is the first day of the rest of your life. Take it to heart. You’re never too young or too old to start communicating what’s best for you.

Know Yourself

People with developmental disabilities are often the least able to explain their needs. Why? Their parents tend to do that for them.

Ne’eman tells the story of a friend who runs a university program for people with learning disabilities. “The single largest problem that he has when students come to his office is he asks them, ‘can you explain your disability to me,’ and they don’t know how to do that,” Ne’eman says. “It’s hard to advocate for yourself if you don’t understand your own needs.”

So, study up. Know your strengths and your needs.

Navigate The System

Home, work, school and the list of systems we live within goes on and on. The key to getting what you want out of each environment is to understand the infrastructure and what role you play within it.

“Understanding how to run your own IEP doesn’t mean you have to understand every line of IDEA. It just means you have to understand what role you play in the IEP meeting and how to assert your own needs and aspirations and get what you want,” Ne’eman says.

It’s the little things in life too, like learning to share a toy with a friend or interacting with other passengers on a bus.

Cut The Cord

Yes, it is a parent’s job to protect their child. But no matter a person’s age or ability level, doing all the talking for them is probably not in their best interest long-term.

The best way to become a self-advocate, Ne’eman says, is slowly over the course of childhood. Ideally, by the time a person enters high school and transition planning begins, they’re capable of expressing their own desires. After all, many decisions are made in high school that will impact the rest of a person’s life.

“A lot of times parents don’t realize that what they’re doing — which was very important and necessary at one time in their life — needs to transition to something different and help support their child to speak for themselves,” Ne’eman says. “There’s a very big difference between the kind of assistance that fosters dependence and the kind of assistance that empowers independence.”

Have A Goal And Stick To It

Speaking up isn’t ever a bad idea, but how you do it could be.

“Obviously you want to select the means that are going to accomplish your ends,” Ne’eman says. “It’s often not terribly productive to start screaming and yelling at people.”

Instead Ne’eman advises a four-point plan:

Know what you’re looking to accomplish.
Have a plan to get your way that works within the system that you’re in.
Consider how you’ll express your position and determine what success will look like.
If you’re not successful the first time, consider working outside the system to achieve your goal.

Find A Role Model

Anyone can be a self-advocate, but sometimes you have to see things to believe them. That’s where a role model comes in.

“Parents as well as children can see people who are succeeding and advocating for themselves and realize that it is possible for people with a wide array of disabilities to achieve success through self-advocacy,” Ne’eman says. “It’s very important for those who are seen as the weakest and most dependent in society to see others like them succeeding and advocating for themselves even against significant odds or significant opponents.”

Want to connect with others like you? The Autistic Self-Advocacy Network has list-serves for teens and adults on the autism spectrum. Or, contact ADAPT, the American Association of People With Disabilities or your local Center for Independent Living.

You can also contact Self Advocates of Indiana.

Have No Fear

Speaking up can be tough. But remember, the hardest things in life are usually the most rewarding.

“It’s very scary sometimes,” Ne’eman acknowledges, particularly when you’re just starting out or if you’re surrounded by a bunch of experts who think they know best.

But it gets easier. “People have to realize and internalize that they are the number one experts in their own lives and once they understand that, they should have the self confidence to speak out and to communicate their own needs regardless of whatever forms of backlash they may get.”

By Michelle Diament Disability Scoop

Community living

2009-10-03T13:29:00.003-04:00

For Those Who Follow supports living options that seek the least restrictive placement for the individual to be safe and happy. It is our hope that this blog will link families to resources to support their children in their family home. To that end, we are sharing information from the Family Voices blog that may be especially relevant to families in Southern Indiana:

Family Voices Indiana acknowledges that many families do not have knowledge and/or access to services and supports that they need for their children with special health care needs and/or disabilities. Often, this impacts families in different parts of the state differently. We have become aware of a provider in Southern Indiana who is circulating requests for support of an ICF/MR (institution) for children in their area. We would like to ensure that families have adequate knowledge of programs that might exist to support their children in the home and community as a preferable and more appropriate option.

Families should be sure they have applied for the following:

Children with Special Health Care Services (for eligible conditions and income levels)

Medicaid Disability (for eligible individuals-this often covers more than Hoosier Healthwise)

Medicaid waivers (this waives family income for children under 18 and provides addtl services)

Special Education Services

Crisis Assistance (if needed)

You can find additional fact sheets on other programs here.

Agencies that can assist with these issues include About Special Kids, The Arc of Indiana andIN*SOURCE. If your child's needs are not being met, please call these agencies and ask for assistance.

Family Voices continues to support life in the home and community for individuals with special health care needs and/or disabilities.

Learning more about special education law

2009-09-29T13:01:00.001-04:00

This time of year things have often settled down a bit at school, and you usually have some idea of what kind of year it's going to be for your child-for better or worse. If you feel that you, or the professionals working with your child, could benefit from additional training in special education law, there are some options for learning more.

First, the DOE has just released the companion guide to Article 7. It's called Navigating the Course and is available here.

About Special Kids (ASK) offers various trainings across the state. You can find more information here.

IN*SOURCE also has trainings available here. They also have regional program specialists who can assist you with case conferences. You can find your local RPS here.

Remember that you can apply for funding from the Family Involvement Fund to help pay for these trainings. If your child has a Medicaid waiver, you can ask for funding under "family and caregiver training."

You can also look at the Shelfari bookshelf located at the bottom of this blog-it has several titles that are recommended reading for families.

Including students with disabilities in gen ed

2009-09-27T13:06:00.002-04:00

Making It Work: A Sample Scenario

Classrooms that successfully include students with disabilities are designed to welcome diversity and to address the individual needs of all students, whether they have disabilities or not. The composite scenario below is based on reports from several teachers. It provides a brief description of how regular and special education teachers work together to address the individual needs of all of their students.

Jane Smith teaches third grade at Lincoln Elementary School. Three days a week, she co-teaches the class with Lynn Vogel, a special education teacher. Their 25 students include 4 who have special needs due to disabilities and 2 others who currently need special help in specific curriculum areas. Each of the students with a disability has an IEP that was developed by a team that included both teachers. The teachers, paraprofessionals, and the school principal believe that these students have a great deal to contribute to the class and that they will achieve their best in the environment of a general education classroom.

All of the school personnel have attended inservice training designed to develop collaborative skills for teaming and problem-solving. Mrs. Smith and the two paraprofessionals who work in the classroom also received special training on disabilities and on how to create an inclusive classroom environment. The school principal, Ben Parks, had worked in special education many years ago and has received training on the impact of new special education developments and instructional arrangements on school administration. Each year, Mr. Parks works with the building staff to identify areas in which new training is needed. For specific questions that may arise, technical assistance is available through a regional special education cooperative.

Mrs. Smith and Miss Vogel share responsibility for teaching and for supervising their two paraprofessionals. In addition to the time they spend together in the classroom, they spend 1 to 4 hours per week planning instruction, plus additional planning time with other teachers and support personnel who work with their students.

The teachers use their joint planning time to problem-solve and discuss the use of special instructional techniques for all students who need special assistance. Monitoring and adapting instruction for individual students is an ongoing activity. The teachers use curriculum-based measurement to systematically assess their students' learning progress. They adapt curricula so that lessons begin at the edge of the student's knowledge, adding new material at the student's pace, and presenting it in a style consistent with the student's learning style. For some students, preorganizers or chapter previews are used to bring out the most important points of the material to be learned; for other students, new vocabulary words may need to be highlighted or reduced reading levels may be required. Some students may use special activity worksheets, while others may learn best by using media or computer-assisted instruction.

In the classroom, the teachers group students differently for different activities. Sometimes, the teachers and para-professionals divide the class, each teaching a small group or tutoring individuals. They use cooperative learning projects to help the students learn to work together and develop social relationships. Peer tutors provide extra help to students who need it. Students without disabilities are more than willing to help their friends who have disabilities, and vice versa.

While the regular classroom may not be the best learning environment for every child with a disability, it is highly desirable for all who can benefit. It provides contact with age peers and prepares all students for the diversity of the world beyond the classroom.

ERIC EC Digest #E521

Parenting through special education

2009-09-25T11:38:00.002-04:00

from Forbes:

It's a typical summer morning for Maureen Blasko, an associate director at Ernst & Young's Washington, D.C., office. While she helps her 8-year-old twins get ready for the day, her husband makes their lunches and shuffles them out the door--one is off to golf camp; the other to figure skating.

Katie, her eldest, is 15. From birth, she's suffered a host of medical issues and now attends a special education school for her epilepsy, learning disabilities and ADD. Blasko still gets her dressed, ties her shoes and reminds her to brush her teeth and hair after she finishes breakfast. She will stay and see that Katie gets safely on the summer school bus (at 7:30 a.m., it's late again), but her mind is already jumping ahead to her packed work schedule. When the bus rumbles in, it's one kiss on Katie's cheek and she's off to the office.

Working moms are expert jugglers. While many are putting in long hours to grow their careers, they are also striving to get their kids in the best schools or classrooms, and watching over homework and after-school activities. Having children with special needs complicates things exponentially. And it's not just a small few dealing with disabilities. According to the U.S. Department of Education, 13.6% of students have disabilities and 6.5 million children are enrolled in special education.

There are federal laws in place to help parents and their special needs kids, but the education system can be difficult to navigate. Parents have to be constant advocates, adding a whole other layer to the familiar working mother balancing act.

The Basics

The Individuals with Disabilities Education Act (IDEA) is a federal requirement, enacted in 1975 and still evolving, that ensures children with disabilities receive a "free appropriate public education" from ages 3 to 22. Each state must provide the minimum requirements, though some provide more, and all interpret the law differently and on a child-by-child basis.

Every child confirmed to have one of 13 disabilities--ranging from autism or learning disabilities like dyslexia to physical or sensory impairments--is administered an Individualized Education Plan (IEP) catered to his or her specific needs. An IEP team that includes the child's parent, a general education teacher, a special education teacher, a school representative and others with special knowledge of the child or disability creates the plan and meets annually (or more, if needed) to discuss the student's progress.

What The Laws Lack

Taking care of her now 23-year-old son, who has several physical and learning disabilities, consumed much of Carol Berman's time--so much so that the former market researcher at a large brokerage firm had to give up her job. His disabilities, and the attendant physical therapy, fights with health insurance companies and "the maze of education laws" had to take precedent. It was a financial blow to her family on top of everything else.

"The basic tenet of the law, that each child is entitled to a 'free appropriate education in the least restrictive environment' becomes tricky," she says. "To a parent, 'appropriate' means 'best,' which is not necessarily the case for the school districts."

She hit several roadblocks. The general policy of inclusion, when special needs children and mainstream kids share a classroom, made it difficult for her son to keep up with the advancing curriculum. She also felt that the advisers who recommended services did so based more on funding and statistics than to the specific strengths and weaknesses of her son.

Ellen Notbohm, author of the best-selling Ten Things Every Child with Autism Wishes You Knew, agrees that there are "100,000 interpretations of the law." She tells parents that constant communication with the school is their best bet and suggests they "look for a school that will see the child as a whole child and not as a baggie of broken parts." But the power--and ultimate responsibility--lies with the parent.

A Second Job

Marilyn Haese, mother of two sons, ages 19 and 17, both diagnosed with dyslexia and AD/HD, runs her own PR agency, Haese & Wood, in Century City, Calif. She is the first to admit a working mom with special needs kids must devote a Herculean amount of time to their education. It becomes a second job.

Every school year she has had to reintroduce her children's ever-changing needs to the school--classroom teachers, yes, but also the librarian, gym teacher and even the principal. Their report cards had measurements that changed and became harder to decipher as the boys aged. But her biggest obstacle has been her battles against her children's IEP teams.

Haese discovered that she had to champion what she knew was in the best interests of her boys. When her older son was in elementary school, for example, he was moved from a mainstream school to a special ed school. Concerned about the social and educational ramifications of extracting him from a "normal" setting, she moved him back to public school--after much ado and against adviser recommendations. He's now in college and she believes the transfer made all the difference. She now tells other parents to be proactive, address problems early and to be the voice your child doesn't have.

Early on Chantai Snellgrove of Vero Beach, Fla., realized she was naïve to blindly trust the school system and has been battling it ever since. "It's very frustrating," she says. "If you don't know the right questions, you won't get very far." As the mother of a 12-year-old daughter with language and learning disabilities, she's had to immerse herself in the research, keep meticulous records and negotiate fervently with an "intimidating" team of professionals to ensure her daughter gets what she needs.

Advocating for her child was so complicated and time consuming that, once Snellgrove learned the ropes, she found a new career--helping others embarking on the same path. Last year, she founded the online magazine, Parenting Special Needs, a resource she says she wished she had from the start.

Ernst & Young's Blasko admits that she has also applied her business acumen to IEP meetings. "Everything is a negotiation, just like work," she says. She got into a boardroom-style broil recently. When Katie, her 15-year-old, was placed in three job skills training classes and had no time in her schedule for science, Blasko refused. Katie will be taking biology in the fall.

What's Next

Rich Robinson, executive director of the Federation for Children with Special Needs, a services and support organization for parents, says he keeps an eye on the controversial issues surrounding special education. Full federal funding, he says, is the "politically hot debate."

This year, it seems that special ed will be granted its fair share. Programs falling under the Individuals with Disabilities Education Act (IDEA) are set to receive $12.2 billion as part of the American Recovery and Reinvestment Act (ARRA). Half was given out in April and the other $6.1 billion will be released in September. The funds, in part, will go toward retraining displaced teachers to specialize in special education.

In other words, it appears that the federal government is looking at special education to help stimulate the economy. To many of these working mothers, shifting funds sounds like a sigh of relief.

UDL online module-FREE

2009-09-20T09:27:00.000-04:00

One of the ways to make curriculum accessible to ALL learners, is to create universal design for learning classrooms. The IRIS Center for Training Enhancements has free online interactive resources that translate research about the education of students with disabilities into practice. A new interactive, web-based module features the faculty at Sycamore Middle School - a urban school with a large percentage of students from diverse backgrounds - as they learn how to develop materials, techniques, and strategies to meet their students learning needs.
See it at http://iris.peabody.vanderbilt.edu/udl/chalcycle.htm

Care notebooks

2009-09-17T10:23:00.000-04:00

What is a Care Notebook?

The Care Notebook has multiple uses. A major role of this notebook is to help parents/caregivers maintain an ongoing record of their child's care, services, providers, and notes. This notebook is a great tool in empowering families to become the experts on their child's care. It is also a way to maintain the lines of communication between the many providers and services that help care for a child and their family.
Health professionals recommend that parents/ caregivers bring this notebook to all medical appointments, therapies, care conferences, on vacations, etc. Health professionals can encourage the use of these notebook by either having them available at the first office visit, upon discharge from the hospital or in the waiting room on a resource table. This notebook should be a team responsibility. Office staff should offer families assistance in filling out the various forms. Medical offices can copy visits, check ups, immunization records, specialist reports, clinical pathways, and give them to families to insert into the notebook.

Why build your own Care Notebook?

The Care Notebook is an organizing tool for families and will help you keep track of important information. Care Notebooks are very personal to your child and ideally should be customized to reflect your child's medical history and current information. For this reason, this web site has been developed to allow you to build a Care Notebook that best meets the need of your child.

Find out more about how to use the Care Notebook web site to create your own personal care notebook by taking the Care Notebook Online Tour.

How do I build my own Care Notebook?

Twenty Care Notebooks have been divided into sections with similar content and made available in both Microsoft Word and PDF formats. Your computer must have Microsoft Word software to open and use the Word documents or to delete, modify, or add your own text to reflect the information you want to include in that particular section of your Child's Care Notebook. You will need the free Adobe Reader on your computer to open and view the PDF documents. You can fill-in and print completed PDF forms from the web site or print blank forms and complete them manually. You cannot save completed PDF forms unless you purchase and have Adobe Acrobat software on your computer. Most people will want to fill-in and save the Care Notebook documents and this is most easily done with the word documents. However, those who do not have Word software on their computer are able to use the PDF format version with the understanding that the forms cannot be altered (or changed). It is recommended to view the online examples before building your own care notebook.

Build your own Care Notebook
Click here to download Care Notebooks forms.

You can find more info and examples here.

UDL institute

2009-09-13T12:55:00.000-04:00

The Universal Design for Learning Institute

September 17th & 18th

Holiday Inn Conference Center

Columbus, Indiana

Click Here to Register

The Bartholomew Consolidated School Corporation is hosting David Rose, Ed.D. for a two day Institute on Universal Design for Learning (UDL). Dr. Rose is the founder and chief education officer at the Center for Applied Special Technology (CAST). During this Institute he will share how the UDL framework and principles address the learning needs of all children.

In addition, experienced teachers will present how they apply the UDL principles in their classrooms. Conference attendees will have the opportunity to discuss policies related to UDL and practical applications. This Institute is an excellent opportunity for school personnel new to UDL and for those who are familiar with the principles of UDL and want to build upon their base knowledge.

Click Here to Register

Health Care Reform

2009-09-08T15:26:00.001-04:00

Online transition courses

2009-09-05T12:47:00.000-04:00

The University of Kansas will offer five online transition short courses designed to provide novice and veteran education professionals the tools and collaboration necessary to improve transition planning and services for students with disabilities. Each course includes four week-long sessions with research-based articles, Web sites, videos, and discussions and is open to anyone interested in transition planning and services. They are specifically designed for secondary-level special education personnel, but the content is applicable to parents, educators, adult service personnel and consultants.

The courses can be taken for graduate or undergraduate credit, continuing education units, or noncredit. http://transitioncoalition.org/transition/section.php?pageId=49

SPED 798 Introduction to Transition Education and Services
Sept. 14-Oct. 11, 2009

Overview of Transition Education and Services
Best Practices in Transition Planning, including IDEA requirements
Self-Determination and Transition
Instructional Strategies for Transition Education

Here's a sample syllabus for this course

SPED 798 Transition Assessment
Oct. 26-Nov. 22, 2009

# Key features of formal and informal assessment
Creating an ongoing and individualized assessment process
Person-centered planning & the role of students in transition assessment
Role of accommodations in testing
How to interpret and communicate assessment information
Translating assessment information into services

Here's a sample syllabus for this course

SPED 798 Family Involvement and Student Involvement in Transition
Jan. 11-Feb. 7, 2010

Family & student perspectives & challenges in transition planning
Family systems & their impact on transition planning
Cultural reciprocity & impact of cultural on transition
Self-Directed IEPs & other techniques for facilitating student involvement

Here's a sample syllabus for this course

SPED 798 Preparing for Employment and Postsecondary Education
Feb. 15-March 7, 2010

Competitive job placement and support
Eligibility versus entitlement
Community-based transition services & supports
Documentation including Summary of Performance

Here's a sample syllabus for this course

SPED 798 Interagency Collaboration during Transition Planning
April 5-May 2, 2010

Barriers & strategies to interagency collaboration during transition
Strategies for collaboration within the local school and community context
The range of services and supports available to students and adults with disabilities within the local community, including Social Security, Medicaid, Mental Health, Juvenile Justice, MR/DD, and Centers for Independent Living
Role of community transition councils

Here's a sample syllabus for this course

To enroll in a course, visit http://www.ContinuingEd.ku.edu/is/sped.shtml

Let your voice be heard!

2009-09-02T21:28:00.002-04:00

Our Voice ... Our Vision ... Our Future
The Arc of Indiana 2009 Conference & Appreciation Luncheon
Thursday, October 1, 2009
Indiana Convention Center
100 S. Capitol Ave., Indianapolis
Let your voice be heard!
On October 1, 2009, The Arc of Indiana, in partnership with the Indiana Governor's Council for People with Disabilities, is hosting a gathering for people committed to positive change. This groundbreaking event will be unlike any that has been held in Indiana before.
Our Voice…
The goal is to bring 1,000 self-advocates, family members, leaders of organizations and other professionals together for one day to lend their voice and opinion on critical issues impacting people with developmental disabilities and their families. Each participant will have a hand held voting device, and will be able to respond to a series of questions in several broad topic areas:
Early Identification and Early Childhood
Education
Post High School Education / Training
Future Planning and Guardianship
Training for Families and Caregivers
Self-Advocacy
Health and Wellness
Employment and Day Supports
In-Home Supports
Living in the Community
Cultural Competency
Voting will be completely confidential. However, demographic information will be collected so that the results can be sorted by self advocate, family member or professional. In addition, the information will be classified as male/female, by age groups and by zip code.
This valuable information will be used to shape future decisions.
Our Vision…
Registration for the conference includes The Arc's annual Appreciation and Awards Luncheon. This year's luncheon speaker is Dr. Tom Pomeranz, a nationally recognized authority, trainer, clinician and consultant in the field of services for people with disabilities. His audiences praise his ability to combine information, humor, passion and storytelling into an informative whole. Dr. Pomeranz will discuss what life could and should look like for people with disabilities.
The Appreciation luncheon will feature the presentation of awards to outstanding people, businesses, and organizations to honor their accomplishments in the field of disabilities. Awards will be presented in a variety of categories including employment, education, community living, professional and individual achievement, public policy and outstanding advocacy.
Our Future…
Following lunch, participants will break into small groups to discuss the questions that were asked in the morning and the answers that were given. During this discussion, everyone will have the opportunity to rank the questions/answers that they think are the most important and the items that need to be addressed. At the conclusion of the day, everyone will receive a report showing how self-advocates, families and professionals voted on each question.
The information gathered, in both the large voting session as well as the discussion session, will be shared with disability stakeholders throughout the state and will be used to help shape future decisions. The goal of this event is to provide information and open a dialog that leads to greater collaboration.
Our Voice … Our Vision … Our Future
Registration is now open for this exciting event. The Conference will begin at 9:00 am and conclude at 4:30 pm. For those attending the Appreciation Luncheon only, the luncheon will take place from 12:00 to 2:30 p.m. Free parking and shuttle service is available from the parking lot of the Indianapolis Zoo, 1200 W. Washington Street.
Registration fees include electronic voting equipment, lunch and parking.
Please register by September 24, 2009.
Self Advocates - $15
Family Members - $19
Professionals - $35

registration link here: http://www.arcind.org/news/?naid=20

The Kennedys' disability legacy

2009-08-29T15:55:00.002-04:00

The disability community lost two great advocates in the Kennedy family: Eunice Kenndey Shriver and Ted Kennedy. The Kennedy family has a history of supporting disability rights issues. The following excerpts give tribute to their work. We need to make sure that work was not done in vain and continue to advocate for those with disabilities.

Small Steps, Great Strides

By Jack McCallum

Originally published in Sports Illustrated Magazine, December 8, 2008

On a steamy July 20th afternoon in 1968, Eunice Kennedy Shriver strode to the microphone at Soldier Field in Chicago and convened the first Special Olympics Games. It was only seven weeks after her younger brother, Robert, had been gunned down in the kitchen of the Ambassador Hotel in Los Angeles, and about five weeks before the Windy City exploded in violent confrontations between police and protestors at the Democratic National Convention.

The assassination and the violence had lasting political effects on the American landscape...and, in a much different way, so did the Games at Soldier Field.

With a crowd of fewer than 100 people dotting the 85,000-seat stadium, about 1,000 athletes from 26 states and Canada, all of them routinely classified in those days as mentally retarded, marched in the opening ceremonies and followed Shriver as she recited what is still the Special Olympics oath:

Let me win,
but if I cannot win
let me be brave
in the attempt.

Chicago Mayor Richard Daley, who would become a polarizing figure at the convention that August, attended the four-day event and told Shriver, "You know, Eunice, the world will never be the same after this."

While skeptics shook their heads and most of the press ignored the unprecedented competition, Shriver boldly predicted that one million of the world's intellectually challenged would someday compete athletically.

She was wrong. Today, more than three million Special Olympic athletes are training year-round in all 50 states and 181 countries. They run races, toss softballs, lift weights, ski moguls, volley tennis balls and pirouette on skates. There are World Winter Games, the most recent in Boise, Idaho, in February, and World Summer Games, which will be staged next in Athens in 2011. Documentaries, Wide-World-of-Sports presentations, after-school TV specials, feature films, cross-aisle Congressional teamwork and relentlessly positive global word of mouth have educated the planet about Special Olympics and the capabilities of the sort of individuals who were once locked away in institutions. Schooling, medical treatment and athletic training have all changed for people with intellectual disabilities as a result of Shriver's vision; more important, so have minds, attitudes and laws.

Disability Rights

In 1978, Senator Kennedy cosponsored the Civil Rights Commission Act Amendments of 1978, which expanded the jurisdiction of the Civil Rights Commission to protect people from discrimination on the basis of disability. Two years later, Kennedy cosponsored the Civil Rights for Institutionalized Persons Act, which enforced the rights of people in government institutions such as the elderly, the disabled, the mental ill, and the incarcerated under the Constitution. This law grew out of increased awareness of the unhealthy and inhumane living conditions and treatment of many people within government institutions, such as the case of the Willowbrook State School for the Mentally Retarded, which came to the forefront in 1972. Beyond assuring humane living conditions and basic rights to such individuals, the law details its protection of the religious practice of the institutionalized.

Senator Kennedy cosponsored legislation in 1984 requiring polling stations to provide physical accessibility for disabled and elderly people on federal election days. If this is not possible, polling places are required to provide alternative voting methods so that individuals in such a situation are able to cast a ballot. The law also holds that polling places must make registration and voting aids available for the elderly and people with disabilities. In 1986, Kennedy was an original cosponsor of the Air Carrier Access Act. This law required that facilities and services be provided to people with disabilities traveling by air. Accessibility requirements applied not only to the aircrafts but also to airports and terminals.

In 1988, Kennedy introduced the Fair Housing Act Amendments to extend the Fair Housing Act of 1968 to include people with disabilities and families with children. By expanding the law, theFHAAprohibited discrimination towards people with disabilities in the sale or rental of housing and in the terms, facilities and services provided. It also sets certain guidelines for remodeling and necessary modifications to a residence for both the landlord and the tenant.

On July 26, 1990, the Americans with Disabilities Act was enacted into law. Introduced by Senators Kennedy and Harkin, the ADAprohibited discrimination by a covered entity (employer, employment agency, labor organization, etc) against any qualified individual with a disability in job application procedures, hiring or discharge, compensation, advancement, training, etc. The law declared that no qualified individual with a disability shall be excluded from the participation in, denied the benefits of, or subjected to discrimination by a public entity, and also required accessible rail transportation and telephone services for persons with speech or hearing impairments.

In response the alarming level and increase in the victimization and violence against people with disabilities, Congress passed the Crime Victims and Disabilities Awareness Act of 1998. Kennedy cosponsored the bill, which directed the Attorney General to conduct a study on the issue and to include specific details regarding the crimes against people with disabilities and to include them in the National Crime Victimization Survey, an annual publication. In 2004, Kennedy was an original cosponsor of the Assistive Technology Act, which supported states in an effort to sustain and strengthen the capacity to meet the assistive technology needs of individuals. In addition, it would focus funding on investments in technology that could benefit those living with disabilities. Millions of Americans experience severe disabilities that affect their ability to see, hear, communicate, walk, or perform other basic life functions. This should not preclude any individual from enjoying full integration in the economic, political, social, and educational activities embedded in American life.

Vocational Rehabilitation and Employment

Senator Kennedy was a strong supporter of the Rehabilitation, Comprehensive Services and Developmental Disabilities Amendments of 1978. These amendments included a number of very important steps in disabilities legislation. It established a functional definition of developmental disability, created the National Council on the Handicapped and the National Institute of Handicapped Research, set a funding minimum for protection and advocacy services and authorized a grant for independent living services and opportunities for people with disabilities.

In 1982, Kennedy was one of the main cosponsors of the Job Training Partnership Act, which was designed to break down some of the barriers facing “economically disadvantaged” individuals and among them people with disabilities. Kennedy made sure to include provisions stating that people could not be excluded from the training program and the advantages it provides based on a disability or other classification. Four years later, Kennedy and Senator Quayle introduced amendments to the Act that afforded people with disabilities special consideration in the awarding of discretionary grants within this training program through the provisions of these amendments.

In 1986, Kennedy cosponsored the Employment Opportunities for Disabled Americans Act, which made work incentives for disabled individuals a permanent fixture of the Social Security Act. People working despite severe disabilities became eligible for special status to receiveSSIbenefits and Medicaid coverage. This special status was valid unless the impairment went away or their earnings exceeded an amount that zeroed out their cash benefits.

In 1999, Kennedy was the primary sponsor with Senator Jeffords of the Ticket to Work and Work Incentives Improvement Act. The law and its “ticket to work and self-sufficiency” program expanded employment opportunities for people with disabilities through providing disabled Social Security beneficiaries greater support and more options. It also allowed for working people with disabilities to receive benefits from Medicaid and/or Medicare.

Assistive Technology

Senator Kennedy was an original cosponsor of legislation that provided funding to all 50 states in order to raise awareness about the potential of assistive technology to significantly improve the lives of people of all ages with disabilities. It also aimed to facilitate a coordinated effort amongst state agencies to provide and encourage the use of assistive technology for individuals with disabilities. Senator Kennedy cosponsored reauthorizations of the Act in 1994, 1998, and 2004.

Education

Senator Kennedy was an original cosponsor of the Education for All Handicapped Children Act of 1975, which later became the Individuals with Disabilities Education Act (IDEA). The law served to amend the Education of the Handicapped Act and to guarantee a free and appropriate public education to children with disabilities, regardless of their severity, in all states.

Kennedy was an original cosponsor of the Handicapped Children’s Protection Act of 1986, which overturned a Supreme Court decision and allowed courts to award sensible attorneys fees to parents of children with disabilities winning in due process proceedings and other court actions under part B of the Education Act. That same year, Kennedy cosponsored amendments to the Education of the Handicapped Act, establishing a new grant program aimed at developing an early intervention system benefiting infants and toddlers with disabilities and their families. It also sought to provide and promote preschool programs for children ages 3 to 5 with disabilities.

In 1990, Kennedy was an original cosponsor of a bill that changed the name of the Education of the Handicapped Act toIDEA, changed the term from handicapped to disability, and added two categories to the amendment: autism and traumatic brain injury. It also reauthorized the programs under the previous act to provide improved support to students with disabilities particularly in the terms of computer access and assistive technology. In 1997, Kennedy was an original cosponsor of amendments that consolidated the original 9 subchapters of IDEAinto 4 subchapters. Among the other changes were the inclusion of special education in state and district-wide assessments, the promotion of mediation as an option to disputes between teachers and parents of children with disabilities, a provision that special education students be disciplined in the same way as other students, the continuation of services to adult inmates with disabilities who were eligible forIDEAprior to their incarceration, and the requirement of charter schools to meet the needs of children with disabilities and to receiveIDEAfunds from district schools.

In 2004, Kennedy was the sponsor and lead negotiator of the reauthorization of theIDEA, with a new focus on promoting better alignment of special education with general education and having school districts be accountable for the educational outcome of all students, including students with all ranges of disabilities.

Health Care

In 1982, Kennedy was an original cosponsor of legislation that allowed for states to cover home health care services for particular children with disabilities under their Medicaid plans. This was intended to allow parents “respite” or rest periods with a trained professional helping to care for their child’s needs.

In 1990, Kennedy, along with Senator Hatch, introduced the groundbreaking Ryan WhiteCAREAct, which provided emergency relief to thirteen cities hardest hit by theAIDSepidemic, and also provided substantial assistance to all states to develop effective and cost-efficientAIDScare programs, aimed particularly at early diagnosis and home care. Other services included in the bill were drug treatment, dental care, substance abuse treatment, and outpatient mental health care.

In 1991, Kennedy sponsored legislation to reorganize the Alcohol, Drug Abuse, and Mental Health Administration. Specifically, it separated the previously combined treatment and research branches of the department, which improved the capacity to effectively address both the prevention and treatment of substance abuse and mental health.

The Ryan WhiteCAREAct reauthorization of 2000 reaffirmed Senator Kennedy’s commitment to providing access for persons with HIVdisease to life-sustaining medications, medical care and other essential services. The Act authorized nearly $9 billion inHIV/AIDS services over the next five years.

In 2006, Kennedy won a 5-year-long battle to pass the bipartisan Family Opportunity Act. The law provides states the option of allowing families of disabled children to purchase health coverage through Medicaid. The bill passed as an amendment to the budget reconciliation bill.

In 2007, Senator Kennedy reauthorized the Ryan White Care Act of 1990. The reauthorization focused on quality of life issues, new and emerging therapies, and ensuring that funding for programs followed the people affected by the disease. Having over 15 years worth of information and recognizing that the disease had changed significantly, the focus was placed on prevention and issues of chronic care. It also acknowledged that the demographics had changed and the disease was now evident beyond the cities and in rural areas as well. Drug treatments had also advanced and people living with HIVwere staying alive 20 to 30 years beyond their day of diagnosis.

In 2008, after more than 10 years of effort, Senator Kennedy championed historic legislation to reform the inequities in the way mental health and substance use disorders are treated by the insurance industry. This legislation, co-sponsored by Senator Domenici, assured individuals living with mental health and substance abuse issues that there mental health benefit would be treated equally with the medical-surgical benefit regarding treatment limitations and financial requirements. This means that co-pays, out of pocket expenses, and deductibles cannot be treated differently than they way medical-surgical is treated. This legislation assured equity for 113 million Americans.

In July of 2009, Senator Kennedy succeeded in having theCLASSAct be included in the text of the Affordable Health Choices Act that was passed out of theHELPCommittee. This bill aims to provide the elderly and disabled with a daily cash benefit that allows them to purchase the services and supports they need to remain in and be productive member of one’s community.

Developmental Disabilities

In 1975, Senator Kennedy cosponsored legislation to create a “bill of rights” for people with developmental disabilities. The bill also provided funding for services for people with this type of disability, supplemented funding for affiliated university facilities and created state-based systems of protection and advocacy groups in all 50 states. Kennedy was an original cosponsor of the reauthorization in 1987, which updated the language of the 1975 law. It also gave greater independence to the State Planning Councils, fortified the authority of the state-based protection and advocacy systems in investigations into abuse and neglect, and established separate line items for funding and training in university affiliated programs.

The hidden curriculum

2009-08-27T09:00:00.000-04:00

You've heard a great deal about the social studies or the science or the math or language arts curriculum. But, are you familiar with the term, "hidden curriculum?" These are the unwritten or implicit rules we were never taught but just seem to know.

The stress of the "first day of school" attire is one example of the hidden curriculum. (Do you remember it?) It's so important to be seen as wearing what everyone else is wearing and not stand out in any way, at least initially.

Students with disabilities are often "left in the dark" when it comes to an understanding of the hidden culture within the school. I will never forget the graduating senior girl with whom I worked many years ago. It was the tradition for seniors to wear the same shirt on class day, a shirt that was purchased prior to the actual day. This student was unaware of the tradition and was the only one to attend class day not wearing the shirt. I saw her later that day and she relayed the story with sadness and humiliation. Why did she not know? How was she left out? Who's responsibility was it to ensure that all students were aware of the tradition (hidden curriculum)?

It's important to understand that the hidden curriculum is unique at every school. Do you and your colleagues acknowledge the presence of the hidden curriculum? How are you addressing this unwritten reality to meet the needs of all the learners in your classrooms?

Unfortunately, students with special needs are often ostracized as a result of their lack of insight into the hidden curriculum present at their school. The Autism Network addresses the unique challenges students on the autism spectrum experience:

Individuals who have ASD do not come equipped with the same ability to understand the hidden curriculum. As a result, they break a lot of social and behavioral rules without intent or even knowledge that they are doing so. This coupled with their difficulty in generalizing information from one situation to another leads them to making the same mistakes over and over again at a tremendous social cost.

Rick Lavoie addresses the topic in his book, It's so Much Work to be Your Friend, Helping the Child with Learning Disabilities Find Social Success.

“The Hidden Curriculum … consists of the unwritten, unspoken rules of school … its culture that includes shared norms, values, beliefs, traditions, rituals, and customs …In fact, success in the standard curriculum is often secondary to success in the Hidden Curriculum." (p. 253-255). “It is critically important that we teach the Hidden Curriculum to socially incompetent children with the same commitment and planning that we present the standard curriculum.” (p. 256).

How much do you know about the hidden curriculum and social success? Thanks to a recent post by Kate Ahearn at the Teaching Learners with Multiple Special Needs blog, I recently became aware of a resource, The 2010 One a Day Hidden Curriculum Calendar for Older Adolescents and Adults for those of you working with high school students. There's also a version for younger students, The 2010 Hidden Curriculum One a Day Calendar for Kids: Items for Understanding Unstated Rules in Social Situations. They retail for about $16 each or both for $22.

To learn more, check out these additional resources:

Council for Exceptional Children: The Hidden Curriculum - Unwritten Rules That Students with Disabilities Often Miss

Last One Picked, First One Picked On: Learning Disabilities and Social Skills DVD by Rick Lavoie (get it from your library)

The Hidden Curriculum: Practical Solutions for Understanding Unstated Rules in Social Situations by Brenda Miles, et al

from EdTech Solutions - Teaching Every Student

Safety at school

2009-08-25T12:08:00.000-04:00

Being a huge proponent of children and adults with any kind of medical issue or special needs wearing identification/medical alert tags there have been a few posts on this blog about the issue before. My favorite false argument is that non-speaking students do not need medical ID because someone is always with them, which fails to take into account what could happen if that "someone" is the person who has a medical emergency. How will the non-speaking individual identify him or herself? Or give emergency information for his or her caretaker? Or give a phone number to reach someone else to help? Or assure emergency responders that everything is OK? Trust me no one is going to turn on and set up an AAC device. Medical identification is essential for all non-speaking individuals.

Beyond this medical identification can save precious minutes at school and other places in a crisis. If all the teacher/aide/school nurse has to do is call 911 and read the info off a bracelet/necklace/shoe tag then the ambulance will get their fast compared to the amount of time it would have taken to locate the emergency forms in the file cabinet/binder/desk drawer. This are minutes that count.

Zoo Bears ID carries some wonderful ID items for infants and children, including special needs children (such as shoe tags and zipper pulls for kiddos who will not wear anything else). Carrying some kind of ID is a must for all adults, period. N'Style ID offers a nice selection for Tweens and Teens. My personal advice is to go through Medic Alert for the toll free hot line paramedics/ERs can use to get your medical records and then print that on stylish or sensory appropriate ID. Yes, it costs more, but it is worth it. (As an insulin pumping diabetic who is allergic to penicillin I personally wear a Medic Alert bracelet with a pretty beaded bracelet for special occasions.)

Safety Tats are personalized, rub on tattoos (write on, stick on also available) sold in packs of 30 for about $20.00). You can order them to indicate I.C.E. (In Case of Emergency), Allergies, Medical Conditions, Special Needs or Original. School field trip sets can be ordered as well. Kids Kontact sells a similar product in Australia. FiddledeeIDs sells alert stickers and temporary tattoos and other medical alert gear. These are a nice options for family trips, day trips, vacations, and similar excursions to unknown and unfamiliar locations.

Another product that can increase safety for some individuals with special needs, especially those with limited or no-speaking skills is a special lunch box which clearly indicates food allergies and/or feeding issues. Allergators and STAT Kids both sell lunch bags which clearly mark lunch bags with a child's allergies. STAT Kids bags can be personalized (i.e. for pureed food, diabetic diet, ketogenic diet, choking precautions or food from home only); they also sell backpacks and fanny packs.

At the very least ask parents to (or make for your child) a medical alert wallet card for free:

via Teaching Learners with Multiple Special Needs

Easy Math Adaptations

2009-08-22T14:13:00.000-04:00

Today I am going to share some of the strategies that I shared with my teachers. They are taking my class so that they can get a Master’s degree in Special Education and this course is a culmination of all that they have learned to this point. It is so exciting to see them teaching and interacting with the students.

In addition to the strategies listed, I have found some websites that also give great suggestions. They areAbout.com: Mathematics, Reading and Math Strategies, The Accent Center, and From Jim Wright: Intervention Ideas for Mathematics.

Here are the suggestions that I have given my teachers. If you have any other suggestions or links to great websites, I would love to see them. Please add them in your comments so I can share them with my teachers.

1. Use manipulatives to understand a concept.
2. Teach math vocabulary.
3. Use visuals and graphics to illustrate concepts to the students.
4. Have students make up their own word story problems.
5. Teach students how to use a calculator.
6. Teach money concepts using play money.
7. Teach time by using manipulative clocks.
8. Have students restate word problems in their own words.
9. Younger children can play sorting games.
10. Ask the student to tell the number that comes after (before, between) a designated number.
11. Give a pattern of numbers and ask students what comes next.
12. Use number lines.
13. Arrange by size and length.
14. Use flash cards, rolling dice, playing cards to teach computational facts.
15. Subtraction of 9s from teen numbers (16-9 = ?; 1+6 =7)
16. Puzzles cards with facts and answers on each piece

from Successful Teaching

Reading and Writing Strategies

2009-08-20T12:14:00.000-04:00

Some of the things we are discussing are some strategies for teaching reading and writing and I thought I would share them here. I also found some websites that give great suggestions such as Reading a-z.com, Mindtools, and Just Read Now.

1. Ask students to retell or summarize the story.
2. Create graphic organizers.
3. Put pictures of story events in order.
4. Have students write their own reactions to stories and factual material.
5. Repeated reading: passages of 50 to 200 words long and at a difficulty level that enables the student to recognize most of the words. The student then reads the selection orally three or four times before proceeding to a new passage.
6. Reading predictable books
7. Language experience method: students dictate stories to the teacher. The stories then become the basis of their reading instruction.
8. K-W-L technique: Students think of and state all the knowledge they have on a subject. Each student thinks of wand writes on a sheet of paper what he or she want to learn from the reading. Students read the lesson silently and write what they have learned from the reading.
9. Highlighting multiple word meanings
10. Exploring sources of vocabulary using newspapers and advertising. Keep a list of new words.
11. Play word games like categories (name types of cars, or dogs, or buildings, or clothes etc.)
12. Word webs – like a graphic organizer; giving more details like “What is it?” “What is it like?” and “What are some examples?”
13. Point out syllables in multisyllabic words.
14. Teach word families (ex. At, cat, bat, rat)
15. Write in journals.
16. Use materials without words like comic books without captions or books with photos. The students figure out the story content from the pictures.
17. Written conversations – instead of saying what they wish to communicate to the class, they write the message and give it to the teacher or other students. Then the teacher or students respond in writing.
18. Patterned writing – the students use a favorite predictable book with a patterned writing and then they write their own version. (ex. Brown Bear, Brown Bear)
19. Express their ideas in pictures.

from Successful Teaching

Adapting Books

2009-08-18T15:12:00.000-04:00

I picked up a PDF recently on how to adapt books. It's a simple, low-tech way to create more accessible books for all students. All it requires is a copy of the book, some zip-top bags, a stapler, and some tape. Have fun adapting books!

Adapting Books

from Teaching All Students

Inclusion Ideas

2009-08-14T16:16:00.000-04:00

I was recently sharing with my class some information about inclusion and thought I would share it with you. I think inclusion can be great if it is set up right but if there is not enough preparation, planning, and communication between teachers, it can be a disaster. Too often strong egos and power struggles can undermine the whole process. Hopefully these suggestions will help an inclusion program be more successful.

Preparing for Inclusion:

1. Identify the purpose of Inclusion and what it means for the students. Inclusion is necessary to meet the needs of students with disabilities. Strategies and projects may actually end up helping all of the students in the classroom.
2. Identify the roles of each teacher. Each teacher should have equal power and one teacher will not be used as a glorified aide.
3. Identify times and places for planning and the importance of communication. When and where will we plan for the lessons? Both teachers need to give input and share the responsibility of teaching the lessons.
4. Identify problems solving strategies that will happen when conflict occurs. If the teachers are having a problem, how will you work to solve this problem?) This needs to be agreed upon before a problem arises.
5. All of this needs to take place before classes start.

During the School Year:

1. Brainstorm ideas for teaching a certain topic. Try to think outside the box in order to make the topic interesting and meet the different learning styles of the student.
2. Don’t be afraid to try something new.
3. Look at alternate ways to assess the learning. Offer different options and allow the students to choose.
4. Review the lesson and make sure each teacher understands their role.
5. Evaluate the lesson afterwards to see how the next one can be improved.
6. Don’t take criticism personally but rather a way to help better meet the students’ needs.

Nine Types of Adaptations:

· Size – reduce the number of problems as long as the student can show the skill is mastered.
· Time - extra time may be needed, timeline given to complete the task, or tasks broken down into time chunks.
· Level of Support – peer buddies, tutors, teaching assistants
· Input – visual aides, concrete examples, hands on activities, cooperative groups
· Difficulty – allow use of computer, simplify directions
· Output – verbal response, podcast, drawing, Voicethread, comic strip
· Participation – find roles that student can be successful doing (helper, assistant etc.)
· Alternate – adjust the goals for the student
· Substitute Curriculum – different instruction and materials for the student.
from Adapting Curriculum and Instruction in Inclusive Classrooms: A Teacher's Desk Reference, by Deschenes, C., Ebeling, D., and Sprague, J., 1994.

Great example of inclusion that works:

South Paris Collaborative Site : http://www.herricks.org/webpages/spcollaborative/
Lisa Parisi and Christine Southard teach fifth graders in NY. Lisa is the general ed teacher and Christine is the special ed teacher. They decided to make this a true inclusion classroom and combined their names to form the South Paris Collaborative classroom. Both teachers have equal sized desks and equal say. They spend a lot of time in planning and communicating with each other. They also use the Universal Design for Learning to plan lessons for their classes and meet their students’ needs. Technology is used every day in their lessons and they collaborate with other classrooms around the world. This is a great example of how inclusion can work successfully in the classroom

Universal Design for Learning (http://www.cast.org/)
“Universal Design for Learning (UDL) is a framework for designing curricula that enable all individuals to gain knowledge, skills, and enthusiasm for learning. UDL provides rich supports for learning and reduces barriers to the curriculum while maintaining high achievement standards for all.”

Resources:

Inclusion home page http://www.uni.edu/coe/inclusion/

Special Education inclusion article: http://www.educationworld.com/a_curr/curr320.shtml

from Successful Teaching

Talk of the Nation: Attitudes towards the intellectually disabled

2009-08-11T18:53:00.000-04:00

Pop Up IEP (responses to common statements)

2009-08-10T16:38:00.000-04:00

The Pop-up IEP

Click on the quote to see good responses and support for your responses.

1."Sorry... we don't have the money."	2."We're not convinced your child needs that."	3. "I have 400 other children in this building."	4. "We assess your child using only teacher observation."
5. "The general education teacher couldn't be here today."	6. "We're the professionals, we know what's best for your child."	7. "Let us get back to you on how that might work."	8. "I don't have the authority to make that decision."
9. "Your child is doing great compared to other deaf/hh kids."	10. "If you don't teach your child to sign, he'll use it anyway when he grows up. You better do it now."	11. "If you teach your child to sign, she will never learn to talk."	12. "We took the liberty of filling out a 'draft' IEP... please sign here."
13. "Your child will have to use signed exact English. We don't do ASL here."	14. "Your child is two years delayed in language... we can't really expect more than that."	15. "You must be in denial, your expectations are too high for your child."	16. "We don't need to write that suggestion down in the IEP, we'll do the best we can to get that done."

Copyright © 2002 NCLID - Developed by "Families for Hands & Voices"
- Permission to use for educational purposes granted.

http://www.handsandvoices.org/articles/education/popup/pop_index.html

Transportation to school

2009-08-06T16:33:00.000-04:00

Your child is entitled to transportation under related services in the IEP. This does not always mean that your child has to ride a "special" bus. Your child is entitled to LRE (least restrictive environment) and this includes the bus ride to and from school. Your child's ride should also not be longer than needed, and s/he should not have a shortened school day (unless medically needed) just because s/he rides specialized transportation (if needed).

These resources may help you plan for transportation for your child with a disability:

Transportation to School
The following documents describe procedures some communities use in regards to transporation to school for children and youth with special health care needs.

Georgia School Bus Driver Training Manual p.208 How to disconnect or cut wheelchair securement and occupant protection equipment, and other support equipment (air tubes, feeding tubes, etc.). Knowing how long the student can survive with interrupted support equipment; page 139 Transporting Students with Special Needs
Emergency and Rescue Procedures: A Guideline Manual for School Bus Involvement - page 20: Exercise caution: some pupils have catheters or are tube fed. The hoses or tubes have to be anchored somewhere and sometimes are anchored to the wheelchair. If straps are severed and the pupil is pulled from the wheelchair to evacuate them, any bodily (including internal) hookups to the pupil are likely to be ripped from the body and possibly cause severe internal problems.
Special Needs Student Transportation: p. 52: Whether students should be evacuated in their wheelchairs or removed from their wheelchairs before evacuation. Exercise caution: some students have catheters or are tube fed. The hoses or tubes have to be anchored somewhere and are sometimes anchored to the wheelchair. To evacuate them bodily might rip hookups to the student which could cause severe internal problems.
Transporting Students with Special Needs, U.S. Department of Transporation

When Your Child With Special Needs Goes to School

2009-08-04T14:43:00.000-04:00

Have you talked to your school nurse? Has your child recently been in the hospital? Has your child’s care plan changed?

Your child deserves appropriate care at school. Working with your child’s care team can help your child stay healthy at school. Your child’s care team may include your child’s doctor, school nurse, principal, teacher and others. Plan ahead with them before your child goes to school. Don’t be afraid to ask questions or share ideas to get the help your child needs.

Before your child goes to school, talk with your child’s care team about:

When your child will be ready for school
Expectations for your child’s care and treatment at school
Your child’s pain, discomfort, or energy level at school
If your child will need to miss school, have a hard time concentrating or difficulty learning skills
What supplies, equipment or adaptations your child may need at school, like crutches, a wheelchair or g-tube feedings
How your school nurse or school can help you, and what services they provide
Transportation for your child to and from school (be sure to talk with your child's bus driver)

Prepare for school:

Gather any medicines and forms needed for school
Create an emergency plan and list of phone numbers for you, your child’s care team and other contacts
Fill out and distribute your child's In Case of Emergency Form, Contact List, and Care Notebook's School Contact List

Once your child has entered school, be sure to keep updated on:

New behaviors or feelings your child may have, and the need for counseling
Changes in your child’s activities, like gym class, lunch, outdoor recess, where to sit in class and field trips

Will the real professional please stand?

2009-08-02T14:00:00.000-04:00

The following lists how a "real" professional acts.

1. They don't make judgments about me based on what other people say.

2. They come to meetings on time.

3. They don't talk about other cases during their meeting with me.

4. They don't reject my ideas.

5. They don't assume my child can't learn.

6. They recognize my child's strengths.

7. When giving me bad news, they do it tactfully and with compassion and in a private (if possible) place.

8. They don't have to take time to read through their files at the meeting to find out who the meeting is about.

9. They don't assume that their way is the only way.

10. They don't try to force issues.

11. They will admit they are wrong, or that they don't have the answer.

12. They don't pretend to have experience or know how to deal with an issue if they don't.

13. They are flexible.

14. They don't try to rush through a meeting.

15. They don't continually glance at their watch.

16. They are honest with me.

17. They are aware of my rights and they let me know what they are.

18. They don't try to impress me with their titles.

19. They don't resent my input.

20. They truly care about children.

It may seem that all professionals would act in this manner, but its one of those sad facts of life that they don't. One of the most professional people I know is my daughter's aide. I have no idea what education she has, but the manner in which she treats me is respectful of myself and Krystal. She is contentious and kind.

Our pediatrician is also a person who treats me with a great deal of respect. He always gives me credit for being able to care for her. He follows up on all the questions I ask him and he will admit to not having all the answers.

Both of these people act professionally. If either of them made a suggestion I would probably do what they suggested, because I don't have all the answers either. They have given me reason to trust them.

Pat Linkhorn is the Editor of Special Education at About.com and a professional advocate for families with children who have special needs. She is also an experienced parent and has two girls with special needs - autism and blindness due to prematurity.http://thelinkto.com/linkhome

How to Talk So Health Professionals Will Listen

2009-07-31T14:49:00.004-04:00

Be clear about what your concern is when you book your appointment. If you have more than one issue that you would like addressed, be sure to specify this, to ensure that the appropriate time is scheduled.
Be prepared. Arrive at the appointment with all of the information that you think will be required. Bring a list of current medications, as well as vitamins and natural remedies, that your child is taking. If you are seeing a specialist, make sure you have all of the related details with you
Prioritize your concerns. Because time is usually limited, it is best to decide ahead of schedule what your most important concerns are. State what these are, at the beginning of your appointment, so that you and your health practitioner can organize your time.
Be brief, very specific, and factual in your description of the problem. Busy health professionals must quickly arrive at conclusions, and you want these conclusions to be based on the facts that are most important.
Do some advance research. This will help you to ask relevant questions, and to participate in the discussion.
Be sure to ask questions during appointments. If you aren’t sure you’ll remember details later, write them down.
Follow exactly the advice and instructions that you are given.
If you feel that your concerns have not been adequately addressed, be sure to state this clearly. A review of details may be helpful in clarifying your concerns. Should you continue to be dissatisfied, it is reasonable to seek another opinion. Most health professionals will welcome this, and can be instrumental in facilitating a referral.

Remember, you can be an effective advocate for your child. This does not require you to be aggressive or confrontational. When you have your facts, offer clear details, participate in the treatment decisions and follow instructions, you are on the road to establishing a mutually respectful relationship with your child’s various health and wellness professionals. The end result is definitely worth the effort.

Karen Melnick is the author of Your Child's Health & Wellness Record. You can read more about this useful organizing tool in the special needs shops and services section.

Acceptance

2009-07-29T15:05:00.000-04:00

When my son Daniel was only eleven months old, I went for my annual check-up with my obstetrician. While I waited for my name to be called my mind drifted. I had spent a lot of time there the previous year, preparing for Daniel's birth. The smell of the office was familiar and made my body almost feel expectant again.

I imagined that if I went through the waiting room door and into one of the cubicles beyond it I might travel back in time. Maybe my pregnant belly would reappear and I would discover that my baby was due next month and that the last year was a hallucination. It happens in soap operas. I remember when they brought Bobby Ewing back to life on the night-time soap opera 'Dallas' by explaining that the entire previous year's episodes had been a dream of one of the characters. What an escape hatch!

Perhaps I could go back to the moment in time that Daniel's brain growth slowed and change some circumstance or other that would restore it to normal development. What if passing through that door meant awakening to a different reality?

There were two women nearby, one with a baby Daniel's age. They were discussing the sounds their babies were making. The baby boy was repeating "ma-ma" and the other mom mentioned that her daughter was still stuck on "da-da".I watched them and felt a twinge. It brought home again how real his delays were. It seemed to me that he'd been left in their dust and that trying to catch up would be like my being able to lose fifteen pounds before Thanksgiving, only ten days away.

I was used to these passing feelings by then. Mostly I had accepted that my son has special challenges, but sometimes the desire for normalcy rose up within me without warning. Seeing other children his age was one strong impetus for those feelings. Even now, fear of the future ebbs and flows, and optimism follows a similar course.

When I sat down to have my blood pressure taken at the doctor's office that morning, I let the sadness wash over me. Being there reminded me of the high hopes I'd had for my baby while he was still growing inside of me. I felt the reality of microcephaly again and let it go. My life so far hasn't provided any magical doors to change, just portals leading to deeper opportunities for learning how to really love.

Time goes on. Overall I've reached a pretty good balance between trying to optimize his development as much as posssible and just plain enjoy him like any toddler (even though he doesn't "toddle" yet). It isn't hard to fall in love with the adorable little guy, either. All he has to do is smile at me and I'm his. In a fast food, microwave society it's possible to go through life never really appreciating the savory taste of food grown in the backyard, cooked slowly over a flaming burner in your own kitchen. We tend to want things not now, but yesterday.

Daniel's birth began a unique training in patience for me. Having a child with delays in development can sometimes make you feel that you're trying to force a plant to grow. Goals are painstakingly met. It's hard to spend day after day working on a simple skill like holding a bottle when the weeks so often turn into months. So much for the quick-zap, drive-through parenting method!

The upside of the story is that when a milesone is reached, the elation that everyone feels is a high like no other. When my son was finally able to sit without toppling over or folding into the taco position, it was cause for a celebration in our house. When he learned to clap I made homemade chocolate pudding for dessert that night, and we all applauded him in kind.

When we brought Daniel home from the hospital I thought that his having significant challenges would make my life forever sad. It has not. I am happy in ways that I've never imagined before. My son is a major reason for that joy. He grows my heart bigger and helps me to see how capable I really am. He teaches me.

Since his birth he has been examined by over a dozen specialists. He's undergone magnetic resonance imaging and CT scans of his brain, several electroencephalograms, to observe his brain's electrical activity, and countless venipunctures so that his blood can be analyzed for one thing or another. He has physical, occupational, speech, vision, and developmental therapy. Throughout all of this he's become an affectionate, playful little boy.

He's two years old now. I no longer have fantasies of waking up to a different circumstance. Our life together is not what I expected, it's true; and I would never pass up an opportunity to make things easier for him. But in the meantime--that space of time that becomes our lives--I'm loving a little boy who amazes us everyday by his courage, love, and wrought iron will. In these things, he's way ahead of the game.

Carolyn Murray is the single mother of two young children, one with multiple disabilities. She formed the Daniel T. Murray Foundation for Children with Disabilities to help fund her online work at Daniel's Gift, a publication serving families of children with special needs. http://www.danielsgift.com

Rose Colored Glasses

2009-07-27T14:57:00.000-04:00

Parents of children with special needs don't look through rose colored glasses, but it must seem like we do.

I spent some time with a school official the other day. We carpooled on a trip to Columbus. This person is a principal at the MR/DD school both my children attended and I have a tremendous amount of respect for her. She has been there for me as I've advocated for my children to be in the public school system and her understanding of laws has been invaluable. But as we rode to Columbus, she made an interesting comment, which caused me to really sit back and analyze both our reactions to the meeting we attended on the rules revision.

She said, "The longer I'm in this field, the more I realize that these kids are more like typical kids."

"Big deal, " I thought, "I've known that for a long time." The comment stayed there at the back of my mind though, like many things I hear. I felt there was some big insight here that I should understand and I think I have begun to understand, to a degree.

Most parents see our children as children first, instinctively. It's a basic fact for us. They have personalities, likes and dislikes, fears and loves, as do all children. Their disabilities become secondary, once we accept and go on with our lives and begin to build new dreams. When we advocate for them, we expect the professionals to feel as we do about what is possible for them to accomplish. It may seem to them as if we're looking through rose colored glasses because most of them, even the ones who are so helpful, see them through other eyes.

First of all, they see numbers and labels. The system forces them too. Unit funding, minimum and maximum class size, teacher qualification and aides are just a few of the things they have to consider. Unless a professional has a child of their own who has a disability, they can never really relate to what we see. They haven't invested the time, nor the energy that we have. Their futures aren't intertwined in the lives of these children. They cannot afford to be as emotionally involved as we are. They are not able to live the drama that we have.

Parents don't look through rose colored glasses, but it must seem like we do. All professionals aren't against us, but neither are they completely with us. Is there any way we can even out the picture? It might help if we told a few stories and asked some open ended questions when we're dealing with professionals. Ask what they see for our children and remember that they have been taught to think as they do. Don't be upset when their views are different. Work on trying to make them see the same picture we see and don't expect them to understand instantly. Attitudes are difficult, and sometimes impossible to change, but good results speak for themselves.

Battle Cries

2009-07-25T12:03:00.000-04:00

Children with special needs and disabilities are marginalized in our society. How can parents and special needs advocates encourage full inclusion of children with disabilities?

An Interview with Miriam Edelson, author of the excellent advocacy book: Battle Cries: Justice for Kids with Special Needs

How are families with disabled children marginalized in our society?

Families raising children with disabilities can become marginalized from mainstream society in a number of ways. They have no choice but to advocate for a wide range of supports -- assistance with health care, finding solutions to mobility challenges, procuring learning-enabling computer software -- to name only a few. While all parents experience significant challenges from time to time, raising children with special needs often means developing considerable savvy to get the therapies or equipment your child needs. Often, that advocacy is a job in itself -- and it doesn't necessarily end when a child turns eighteen.

For some, the result is that the ordinary activities of life -- grocery shopping, participating in the labour force or rooting at your non-disabled child's soccer game -- take a high degree of organization and juggling family members' needs. The time and energy required may not leave much room for joining a reading group or enjoying other social activities.

How does this affect our disabled children?

All kids benefit when their parents are able to provide safe and loving environments. The vast majority of us raising children with special needs strive to do just that. But truth be told, the extra work involved in learning to decipher medical lingo and navigate social service agencies can be onerous -- and our kids risk not getting the assistance they need to flourish.

Certainly, if you have the financial resources and if English is your first language, your children are more likely to benefit from the best available therapies or equipment. But not everyone is in that position.

How does this affect parents of disabled children?

Along with the joys that all of our children bring to us, families raising children with disabilities often experience a higher stress levels. Unlike most of our neighbours, we may be in constant contact with social workers and home care agencies. Some parents told me that while they need the assistance, it can feel quite intrusive to have their personal lives under scrutiny. Parents can get just "plain worn out", especially if they are unable to access the practical supports and the fellowship community offers.

What approach would be beneficial for special needs advocates?

There are at least two things we can do. As individuals, we need to reach out in our communities. Chances are, there may be activity and support groups for children similar to your own -- and that may include sibling programs. We must never think that we are alone!

Several mothers told me that just by getting on the internet, they were able to glean more knowledge about their child's challenges and explore ways to complement the medical and other health advice they received. Often other families are a great resource.

Second, we need to come together to make our collective voices heard. Chances are that if your child is at-risk because a particular school program or therapy is no longer available, you're not alone. Try and speak with other parents and see if you can sit down together. Get the most accurate information and make an appointment to see your locally-elected officials. Don't take no for an answer. You, your disabled child and your entire family deserve the best care this society can offer.

Interview with Miriam Edelson, the author of the excellent advocacy book: Battle Cries: Justice for Kids with Special Needs

For families of children with special needs

2009-07-23T15:07:00.000-04:00

As a parent of a child with a disability or with special needs you will be only too aware of all the challenges you encounter when you try to get the best help you can for your child. Sadly the list of problems faced by so many children, and their families, never seems to end. Each disability brings with it its own special concerns, but there are many issues which parents share in common.

There is understandably the shock and disbelief on learning that your child is in anyway disadvantaged. It is very hard to accept that this is so. And quite usual at the beginning for parents to block from their thoughts the fact that their child is going to need extra help and will have to be cared for in a special way, perhaps for life. It is as if denial of the problem will make it go away. If only that were so.

The gradual acceptance of the situation is very painful. You may still be agonizing over the question of whether you or your partner are somehow to blame for your child’s condition. All parents go through this kind of anguish. There is a desperate desire to blame somebody.

You may already have felt the deep anger experienced by almost every mother or father in this situation that it should be your child who will have to struggle with a physical, an emotional, or a cognitive disability. You will be know the sickening fear of wondering if you can cope with what you are hearing.

Practically all families wish to do the best for their child, often against tremendous odds. And top of the list for most parents must be to find the best healthcare available. But parents so often run up against a brick wall when trying to get a diagnosis about what is happening to their child. Some physical disabilities are recognized from birth, some children develop an illness which produces them, while some disabilities are more insidious and gradually become apparent as the child gets older and reaches different developmental milestones. It can often be difficult at the beginning to put your finger on just what is worrying you about your child. It can be even harder to know where to turn for guidance or information, with the result that you feel totally lost, and quite alone with your distress.

We all like to think that in our ‘caring society’ today all the help which is needed is on offer. Unhappily that is not usually the experience of mothers and fathers who desperately seek the advice and support they need to help their child in the circumstances I am discussing.

What is the best way to proceed? The first thing is to get as much information as you can about the specific condition which has aroused your concern. Today with the Internet there is more detailed information available to us than previously. Once you can arm yourself with some knowledge about your child’s needs you are in a stronger position to stand firm against the red tape and possible indifference you may meet on the road ahead.

The more facts you have at your disposal, the more confidence you will have to speak up for your child. This is important from day one, and will become even more so when there are battles to be fought about education and other help required such as physiotherapy, occupational therapy, speech and language therapy or psychotherapy. Lack of funds is often given as an excuse why some services are not available. Don’t take this lying down. Ask questions, and go on asking them.

You may need help in getting the right equipment, finding ways of entertaining your baby or child, and even in gaining some respite for yourself. Don’t fall into the way of thinking that only you, and you alone, can care for your child. A worn-out parent will be little help, and especially if you have other children to care for it must be kept in mind that they need time with their mum or dad too. So get assistance before you crack under the pressure.

Remember, too, that having a child with special needs can put an additional strain on any marriage, so try your hardest to get out from the home together for a little while, even if only for the occasional meal. Make sure you talk to each other about your fears and worries. Talk to other people too. Talk to the neighbours, talk to the local school and any local groups. Set up a rota of family or friends who will give you a short break. Look for local charities and organizations who will be only too glad to find people to help you and your child. This will have the added advantage that it will gain local awareness for a particular disability. Ask at the local schools or colleges if some of the older pupils will come in and play with your child for a while.

Try to link up with an organization which has specialist information about your child’s disability. You will find the tips they can give you will be invaluable. Make sure you know your child’s rights about education, etc. Chat online to other parents who share your concerns, and learn from other parents who have already fought some of the battles which you foresee ahead. One parent said to me this week ‘My advice for new parents? Tell them never take "no" for an answer’. So find your voice and make yourself heard - whether it is to a medical, or educational professional. Your child deserves nothing less.

On the Internet you will log onto information about all kinds of disabilities, as well as getting backup for yourself as a parent, so click onto any support group you can.

Jill Curtis is a senior psychotherapist working in the UK. She is the author of fourbooks: Where's Daddy? Separation and Your Child, Find Your Way Through Divorce, Does Your Child Have a Hidden Disability? and Making and Breaking Families. Jill Curtis' website Family Onwards provides a vairety of articles on family life.

Finding Help

2009-07-21T10:50:00.000-04:00

When we have a baby our entire lives change. We're told that before they're born, but we don't grasp the reality of those words until we live it. The night feedings, leaky breasts, colic, runny poop down the leg of the baby when we're shopping for groceries, and cries that can wake the dead. Writer Anne Lamott says that a friend told her that a baby is somewhat like an alarm clock that goes off at random and is always tuned to heavy metal music.

Another surprise, though, and the reason that our species lives on, is the incredible feelings of love and attachment that these tiny beings evoke in us. It's what enables us to rise six times a night and live in a state of sleep deprivation. We learn what it's like to care more for the needs of another than we do for our own.

Plus, just when we begin to wonder how much longer our bodies can take the demands, our bundle of joy starts to sleep better at night, eat solid food, crawl and take steps, and woo us by saying "ma-ma!" The stroll down the normal developmental path is a pleasant one.

Nothing can prepare us for having a baby whose disabilities force us to veer onto a road with no signs and no maps. It can and often does feel terrifying. Eventually, though, even those of us whose kids have the severest of problems, begin to feel okay. We accept that life isn't what we imagined it would be, and we find the silver linings.

In fact, we get so good at managing that we begin to take ourselves for granted. We don't want to be viewed as saints, because we're not, and we certainly don't want our children to be pitied. So, we march on like good soldiers and do what needs to be done.

In my case it includes diapering a boy who is going to be five years old in a few months, giving him seizure medication twice daily, bottle feeding him when he won't drink from a cup, trying like hell to get him to take some solid food again, carrying him where he needs to go, and transporting his wheelchair to and from appointments and outings.

He can't get from place to place on his own, so I move him from the floor to the high chair so that he can play with his trucks. After awhile I carry him outside to swing. When I think he has tired of that (I have to read his body language and expressions, because he can't speak) I bring him in and sit him on the couch with a favorite musical toy for awhile. If I decide he and his sister might like to go for a swim, I wheel him to the neighborhood pool and then hang onto him in his floatie. I'm doing these things alone now, because I'm a single mom.

I've adapted and adjusted. All of the "special needs" have become routine and normal for us. For the most part, I go along feeling that all is well, and life is good.

The joy that his smile and his laughter bring me, the feeling of his talcum powder soft cheek next to mine, his little hands holding my neck...I'd gladly carry him anywhere and everywhere for the rest of my life.

There are times, though, that my need to "do it myself" puts some serious chinks in my armor. Usually, they are crisis times. When Daniel is sick and can't tell me what's wrong, what hurts or what he needs, I can become worn out from holding him, carrying him and guessing at what to try next. It's times like those that are most like reliving the newborn period. A four-year-old newborn can be a real challenge.

Then, if I get sick, the breakdown of family routine reaches a whole new level. If I need to lie down, my seven-year-old daughter is fine entertaining herself with her dolls and her books. Daniel isn't able to play quietly in his room for a couple of hours while mom recuperates. He needs me like a baby does, only even more.

Those times scare me. My extended family is far away, so calling grandma or grandpa is not an option. I am somewhat of an introvert, so I'm hesitant to ask already busy friends to come to my aid.

What to do?
Barbara Gill, in her book "Changed by a Child," has this advice:

Our first priority must be rest. If we have enough rest, then everything else will follow. To ensure this vital rest, we probably will have to get help, another pair of hands in the house. Contrary to popular belief, help is not a luxury, a self-indulgence, or a sign of weakness. It is a necessity. We deserve to have it. So start with the people most likely to say yes, and ask for the help you need.

Like it or not, I'm going to have to start building a "team" to help me. Gill likens our trying to go it alone to a net that only tightens around us as we struggle. I owe it to Daniel, Melody and myself to make sure I stay out of the net.

Someone I love

2009-07-19T14:51:00.000-04:00

Someone I love relies on me in ways you will never understand. Someone I love endures pain and challenges that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that most of us take for granted. Someone I love will never have the opportunities that every child should have. Someone I love will need unconditional love and support after I am gone - this frightens me to the core. Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others. Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet. Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world. Someone I love has needs that require more time and energy than I have to give. Someone I love has needs that mean I am not able to meet basic needs of my own. Someone I love has needs that have become the driving force behind major decisions my family makes. Someone I love has changed me in ways I will never be able to describe. Someone I love has taught me about love and about the really important things in life...

And still others don't understand what it is to be me.. they aren't living in my skin.

© Copyright 2000 Lori Hickman. Originally published as the dedication to Living in My Skin, The Insider's View of Life With a Special Needs Child by Lori Hickman. Reprinted with permission of the author, all rights reserved.

Lori Hickman is a speech pathologist in Washington state. She is the author of Living in My Skin, The Insider's View of Life With a Special Needs Child, and four other books on speech and apraxia.

2009 Disability Pride parade Chicago 7/25

2009-07-15T15:19:00.000-04:00

DIVERSITY ROCKS!

2009 Disability Pride Parade

Saturday, July 25

Downtown Chicago

Step off: 11 a.m.

Dearborn and Van Buren north to Daley Plaza

Plaza Program Noon-2:30 p.m.

www.disabilityprideparade.org

1-866-260-5812

Featuring

Jesse White Tumblers

Comedian Brett Eastburn

Miss International 2008 Jayna Altman

Blues Musician Willie Williams

Violinist Nura Aly

Smooth Entertainer Peter Love

Core Components of RTI in Indiana: Part 2

2009-07-14T18:02:00.001-04:00

A new CEEP Special Report was issued; The Core Components of RTI: A Closer Look at Evidence-based Core Curriculum, Assessment and Progress Monitoring, and Data-based Decision Making.

This is the second report of a three-part series on Response to Intervention (RTI) in Indiana. The current report examines in greater depth the first three core components of the RTI framework to support schools in their implementation and understanding of:

evidence-based core curriculum, instruction, intervention and extension;
assessment and progress monitoring; and
data-based decision making.

Click HERE to view the report in PDF format on the CEEP web site.

Article 7 (special ed law) trainings

2009-07-09T10:12:00.002-04:00

Summer is often a good time to attend trainings to learn more about special education law and IEP's. ASK is offering trainings around the state in the next few weeks. To locate the one closest to you, check their training calendar.

There is a fee for the training, but you can apply for the Family Involvement Fund to cover the costs.

Article 7 (Special Education Workshop) & Preparing Your Child’s IEP
(Individual Education Plan) Training

Overview: This workshop, combining the Article 7 and IEP training, is all day training that offers basic information about special education laws and regulations for Indiana children ages 3-21. It also introduces recent changes in federal law that will impact Indiana’s state regulations. In addition, this training will provide information on how to prepare for a case conference and write an IEP. This training is a great opportunity for family members and professionals who advocate for children with a disability or serious chronic illness.

Autism Family Resource Center

2009-07-07T19:07:00.002-04:00

The Easter Seals Crossroads' Autism Family Resouce Center is a place where families of children of all ages on the Autism Spectrum can connect through parent-to-parent support, become better educated, use library and video resource materials, have free access to the Internet, utiize software to create effective, personalized visual schedules....and much, much more! Visit our resource library to see what materials are available. The Autism Family Resource Center is open to the public. View the Autism Services calendar of events.

Independence Day

2009-07-04T11:49:00.002-04:00

Fun with family and friends, cook-outs, and fireworks are wonderful ways to celebrate our Independence Day. Our forefathers' powerful declaration—"We hold these truths to be self-evident, that all [people] are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty, and the pursuit of Happiness"—lay the foundation for Americans to live self-determined lives of our choice. But what about Americans who happen to have disabilities? Are they also enjoying "Life, Liberty, and the pursuit of Happiness," and living self-determined lives of their choice? Click here to read the Independence Day article at www.disabilityisnatural.com

Modifications for ADL (daily living)

2009-07-03T13:23:00.000-04:00

This info comes from the UK, but it may give you some ideas to speak with your child's OT about:

This page lists a number of possible concerns for children with disabilities such as difficulty eating or being able to safely have a bath. For each concern you can click on links to case studies detailing the experiences of children and their families who shared these concerns. These case studies are based on the clinical experiences of our occupational therapists and not on particular individuals.

Beds and cots

Is your child at risk of injuring themselves on, or climbing out of a standard bed or cot?
Read how soft spaces and specialised cots have helped reduce this risk for both Alexander and Ben.

Does your child experience epilepsy?
Read how an epilepsy sensory has helped Ben's parents sleep soundly in the knowledge that they will be woken in the event of Ben having a seizure.

Chairs

Is your young child unable to sit unsupported?
Read how Mohammed is now sitting independently with the support of a corner chair.

Does your child need supportive seating at school?
Read how the provision of an activity chair helped Chloe to concentrate on her school work.

Eating and drinking

Is your child unable to use standard cutlery?
Read how specialised cutlery and crockery enabled Sophia to eat independently.
Read how Thomas' parents adapted his cutlery using foam handles.

Does your child have difficulty drinking out of standard cups, or anything other than a bottle?
Read how Ruby was helped with a specialised cup and a one-way straw.

Does your child's food go cold before they have finished eating?
Read how an insulated bowl helped Sophia.

Personal care

Is your child unable to clean themselves after toileting?
Read how Olivia gained some independence through using a toilet with wash and dry facilities in combination with a multi-functional shower chair.

Does your child require support in the bath and/or on the toilet?
Read how Jack is supported with a bath seat and a supportive toilet seat.

Is your child ready to start toilet training but your toilet seat is too large?
Read how a trainer toilet seat helped Hannah overcome her fear of using the toilet.

Are you considering adapting your bathroom to meet the needs of your child?
You may wish to read our advice on adapting bathrooms for children.

Does your child have access to a shower?
Read how mobile shower chairs have assisted Olivia and Christopher.

more info at:

http://www.livingmadeeasy.org.uk/index.php

Wrightslaw Conf Indpls 9/18

2009-07-01T12:06:00.001-04:00

Autism Society of Indiana

2009 Annual Conference

Junior Achievement of Central Indiana

7435 N Keystone Avenue

Indianapolis, IN 46240

Friday, September 18, 2009

8:30 - 4:30 pm

http://disabilitygoto.com/WrightslawIndianapolis.html

Wayne Steedman

Attorney at Law

Mr. Steedman's practice is devoted primarily to the

representation of children with disabilities. He has

represented his clients in administrative due process

hearings and state and federal courts.

In addition to a law degree from the University of

Maryland, Mr. Steedman has a Masters Degree in Social

Work. For several years, he served as a Due Process

Hearing Officer in special education cases. He is an active

member of the Council of Parent Attorneys and Advocates

(COPAA).

One-day program, 6.5 hours, focuses on changes in IDEA

2004, the interrelationships between IDEA 2004 and No Child

Left Behind, and how to use these laws to get

better special education services for children

with disabilities.

You will learn about:

• new requirements for evaluations,

reevaluations, parental consent

• new requirements for IEPs, IEP teams, IEP

meetings

• new eligibility requirements for students

with specific learning disabilities

• requirements for accommodations on high

stakes tests, accommodations guidelines,

alternate assessments

• new rules about discipline and manifestation reviews

• new procedural requirements and timelines, including the

“Due Process Complaint Notice” and “Resolution (IEP)

Session”

• requirements for reading programs, essential components

of reading instruction, research based instruction

• requirements for highly qualified teachers and

paraprofessionals

• high stakes tests, accommodations, alternate assessments

• new options and choices for children who attend struggling

schools

• how NCLB applies to children with disabilities

Special Education: IDEA & No Child Left Behind

Agenda

7:45 - 8:30 Registration

8:30 – 10:00

Introductions; IDEA 2004: History and

Overview; Section 1400: Findings &

Purposes; Section 1401: Key Definitions in

IDEA: Special Education, LD, etc.

10:00 – 10:15 Break

10:15 - Noon

Section 1412: Child Find, Least Restrictive

Environment, Private Placements, Statewide

Assessments, Accommodations; Section

1414: Evaluations, Reevaluations, Parental

Consent, Individualized Educational

Programs (IEPs), IEP Teams, IEP Meetings

Noon – 1:00 Lunch (provided as a part of registration)

1:00 – 2:45

Section 1415: Procedural Safeguards: Prior

Written Notice; Resolution Session;

Mediation; Requirements & Timelines for

Due Process Hearings; Discipline. Proposed

IDEA 2004 Regulations.

2:45 – 3:00 Break

3:00 – 4:00

No Child Left Behind Act (NCLB): IEPs;

Research Based Instruction; Reading; Highly

Qualified Special Education Teachers

4:00 – 4:30 Questions and Answers

For those who follow: sharing stories to make the journey easier

Ending the journey

Outreach fact sheet library

Finding Healthcare in Indiana

Tips for Building Self Determination

INDATA blog

Real Work. Real Stories

Turning a Nintendo DS into an AAC device

Two Ways to Make Nintendo DS an AAC Device

FAQ about AT

Resource for integrating AT in the classroom

New UDL resources

Intro to Special Ed in Indiana

Halloween tips for children with autism

Transition Resources at NICHCY

RTI in Indiana

Transportation

Preventing the flu

The Learning Program

Speak Up: your guide to self advocacy

No One Knows You Better Than Yourself

The Time Is Now

Know Yourself

Navigate The System

Cut The Cord

Have A Goal And Stick To It

Find A Role Model

Have No Fear

Community living

Learning more about special education law

Including students with disabilities in gen ed

Making It Work: A Sample Scenario

ERIC EC Digest #E521

Parenting through special education

UDL online module-FREE

Care notebooks

UDL institute

The Universal Design for Learning Institute

Health Care Reform

Online transition courses

SPED 798 Introduction to Transition Education and ServicesSept. 14-Oct. 11, 2009

SPED 798 Transition AssessmentOct. 26-Nov. 22, 2009

SPED 798 Family Involvement and Student Involvement in TransitionJan. 11-Feb. 7, 2010

SPED 798 Preparing for Employment and Postsecondary EducationFeb. 15-March 7, 2010

SPED 798 Interagency Collaboration during Transition PlanningApril 5-May 2, 2010

Let your voice be heard!

The Kennedys' disability legacy

The hidden curriculum

Safety at school

Easy Math Adaptations

Reading and Writing Strategies

Adapting Books

Inclusion Ideas

Talk of the Nation: Attitudes towards the intellectually disabled

Pop Up IEP (responses to common statements)

The Pop-up IEP

Click on the quote to see good responses and support for your responses.

Transportation to school

When Your Child With Special Needs Goes to School

Have you talked to your school nurse? Has your child recently been in the hospital? Has your child’s care plan changed?

Will the real professional please stand?

How to Talk So Health Professionals Will Listen

Acceptance

Rose Colored Glasses

Battle Cries

How are families with disabled children marginalized in our society?

How does this affect our disabled children?

How does this affect parents of disabled children?

What approach would be beneficial for special needs advocates?

For families of children with special needs

Finding Help

Someone I love

2009 Disability Pride parade Chicago 7/25

Core Components of RTI in Indiana: Part 2

Article 7 (special ed law) trainings

Article 7 (Special Education Workshop) & Preparing Your Child’s IEP(Individual Education Plan) Training

Autism Family Resource Center

Independence Day

Modifications for ADL (daily living)

Beds and cots

SPED 798 Introduction to Transition Education and Services
Sept. 14-Oct. 11, 2009

SPED 798 Transition Assessment
Oct. 26-Nov. 22, 2009

SPED 798 Family Involvement and Student Involvement in Transition
Jan. 11-Feb. 7, 2010

SPED 798 Preparing for Employment and Postsecondary Education
Feb. 15-March 7, 2010

SPED 798 Interagency Collaboration during Transition Planning
April 5-May 2, 2010

Article 7 (Special Education Workshop) & Preparing Your Child’s IEP
(Individual Education Plan) Training