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Easter Seals and the Autism Society of America have put together State Autism Profiles

These profiles will help you as a parent of a child with autism learn what services your state offers. For Example: Some states require insurance coverage for autism and others specifically require that Applied Behavioral Analysis treatment be covered. Laws regarding state special education that have passed are also discussed, as well as any government programs for children and adults. For Example: In Illinois we have three Medicaid Waiver programs for children and adults with disabilities; The Illinois Home Community Based Services Waiver, The Illinois Home Community Based Residential Waiver, and the Illinois Home Community Based Services Waiver for Adults.

Check out your state and see what services they offer! Pass the information along to other parents.

This information can be found at the Website: www.autism-society.org/site/PageServer?pagename=

research_advo-States

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Excerpt from my interview with Michael Shaughnessy from www.ednews.org.

What do you see as the main advocacy issues that parents need to be aware of in terms of procuring services for their children in the schools?

1. The first issue, is being able to recognize whether the information that you are given, by special education personnel is truthful. A parent can accomplish this by learning the federal (IDEA 2004) and state rules regarding special education. Also by attending parent conferences and joining a parent advocacy group which are located in every state. Non truthful information hurts children with disabilities, and prevents them from receiving a free appropriate public education (FAPE), which they are entitled to under law.

Parents should ask special education personnel, to show them in the federal or state law, where it states they they can do what they are stating they can do. If school personnel are not able to show you, that what they are saying is true, then it probably is not. Always ask that the proof be in writing, do not just accept what special education personnel say.

2. The second advocacy issue that I see is; parents that have children with disabilities have the right to stand up and advocate for their child. In my book "Disability Deception" I have coined a phrase that I call "assertively persistence." As long as a parent advocates in an assertively persistent manner, and is respectful, they have a duty and right to fight for their child's education.

3. The third issue is; parents that have children with disabilties, must become familiar with the behavior and discipline requirements of IDEA 2004, so that they can advocate for their child, who has behavioral issues. Many children with disabilities, do have negative behavior that is caused by their disabilities. Some school districts would rather punish the child than use research based positive behavioral supports, which is required by IDEA. If you do not know what IDEA states about discipline, then you will not know, what special education personnel can do as far as punishment.

4. The fourth issue that parents face, is that children with disabilities are entitled to all special education and related services they they need, to receive a free appropriate public education (FAPE). Advocating for this is not always easy, and in some cases parents may have to spend a lot of money to see that their child receives FAPE. This puts a severe financial burden on families, and takes a lot of energy, which many parents are willing to do for their child.

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Some children have more than just a learning disability-they may have low frustration tolerance, they are disorganized, confused, and have self esteem and self concept issues. How can parents help to address all of these things?

Most of the things you mentioned can be the sub product of a disability. For Example: Disorganization can be part of ADD or ADHD, as well as some of the other things you mentioned.

Parents can help bringing up any issue that affects their child's education, at an IEP meeting. Sometimes special education personnel would rather focus on academic areas, rather than help children with specific issues such as frustration, self esteem and disorganization.

 
Parents should ask for services to be given to address these issues, and that measurable goals be written, to help their child make progress. Parents should monitor their child's progress and ask for increased or different services or goals, depending on their child's progress.

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More of my interview with Michael Shaughnessy from the Website:

www.ednews.org.

Question: Many teachers have told me that administrators have said to them "answer questions honestly and truthfully, but do not offer any other information." Is the witholding of information ethical, honest, or moral?

My answer: " I have experienced this many times myself, and when I have advocated for other children with disabilities, and their parents. I always encourage parents to ask lots of questions, and ask for lots of information. The sad thing is, that this practice severely hurts children with disabilities, their education and their future. How can you fight against information, that you do not know?

In my experience, the withholding of information is sometimes done, so that parents do not ask for increased special education services. I think this withholding is all of the three things you mentioned; as well as harmful to children's lives.

I would love to hear from teachers, there answers to these questions:

1. Have you been asked to withhold information from parents?

2. Have you been asked to not volunteer any information to parents?

3. Was this done to prevent the parent from asking for increased special education services?

4. Did you comply, or did you fight back?

5. If you fought back did you suffer retaliation?

E mail your answers to: JoAnn@disabilitydeception.com.

I promise to keep your privacy, and never reveal your name or contact information to anyone, or post it anywhere.

The reason I want to do this, is because it helps me understand what teachers are experiencing. I have heard from several teachers who have not been treated kindly, because they stand up for children with disabilities in their class! Parents and children need wonderful caring teachers, let us stand up for you!

Thank you in advance for answering.

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    August 1, 2008 Special Education Spotlight excerpts:

  1. JoAnn's Corner: I received an E mail from a wonderful parent who wanted to put her name on the mailing list for this E newsletter. She wrote something in her E mail that I would like to share with you. She stated: "Special education departments in schools operate like a wild west town in bad need of a sheriff!" I loved this, and think in some cases this is true. Hopefully the sheriff is willing to follow the law of the land (IDEA), and stand up for all children especially those who have disabilities.

2. Disability Deception of the month:

. . .As an advocate I have dealt with behavioral issues a lot over the past 20 years or so! If your child's behavior interferes with their education or the education of others, there are certain procedures that need to be followed.

A functional behavioral assessment (FBA) needs to be appropriately developed to determine what your child is receiving from the behavior. The results of the FBA are used to develop a positive behavioral plan.

Punishment does not work in the long term to bring about positive behavioral changes. Positive behavioral supports and plans are research based, and proven to increase a child's positive behavior which in turn decreases negative behavior.  The supports are based on the results of the FBA, and must be used in a consistent manner.

I have seen children with autism and other disabilities turn their behavior around with the consistent use of positive behavioral supports.

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    The August 2008 newsletter also contains information about my soon to be released E book entitled: Behavioral basics; What Every Parent Needs to Know To Improve Their Child's School Behavior! 

Benefits of Behavioral Basics:

1. You will learn 6 steps to improving your child's school behavior. The E book will walk you through the entire process from Functional Behavioral Assessments, to the development and use of Positive Behavioral Supports and Plans.

2. You will learn about practical easy to use resources, that will benefit your child. Information also given about forms that can be used for the entire process.

3. You will learn easy to understand and use advocacy tips, to help you in advocating for your child in the area of behavior and discipline.

4. You will learn, what special education personnel must do before changing your child's placement, unless special circumstances have occurred. Information on what special circumstances are is also given.

5. You will learn about best behavioral practices, which will work in the long term to improve your child's school behavior.

What parents are saying about Behavioral Basics:

1. Good information on restraints, and how to avoid having them used on your child.

2. Wow--what great information!

3. The information in Behavioral Basics really packs a punch!

The E book should be complete by September 30, 2008. When the E book is complete and posted, the first 10 persons purchasing the E book will receive a 50% discount. 

Be one of the first parents to take advantage of this wonderful E book!