Are you raising your grandchild with Autism, or other disabilities? Are you having difficulties in financial areas, health insurance areas, or special education?  Would you like to learn a few tips about these issues to help you in this journey? This article is filled with 5 tips to make your job easier so that you can enjoy your grandchild.

Tip 1: If your grandchild’s disability qualifies they may be able to receive SSI, which would give you additional income every month. SSI takes into account a parents income when the child is below 18 years old, but exempts grandparent’s income from the consideration. What Social Security does count as income is Child Support for the child, any work of the child, and other public benefits. If you are not receiving any support for the child, and the child’s disability qualifies you may be able to receive SSI for the child. Your Social Security Office may decrease the child’s benefits due to the amount that you are giving the child based on room and board; be sure and check out whether your state does this.

Tip 2: If the child is eligible for SSI they should be eligible for Medicaid to pay for medical costs, and other public benefits. Since many children with disabilities have medical issues this would help decrease your financial responsibility. Keep in mind though that Medicaid may not pay for everything the child needs (counseling, equipment etc), so you may have some expenses out of pocket. Each State may have different benefits under Medicaid, so be sure that you check your States benefits.

Tip 3: If you are retired or on Disability and receiving Social Security your grandchild may be able to receive benefits, based on your lifetime earnings. I would only consider this if the child was found ineligible for SSI, because receiving SSI makes the child eligible for other public benefits.

Tip 4: Check out various disability organizations in your area and see if they have any groups for grandparents raising grandchildren with disabilities. The support you receive could be very helpful, and this could be a way to make friends with other grandparents.

Tip 5: Check out the information from the Children’s Defense Fund because they have a lot of information on grandparents raising grandchildren with disabilities. They can be found at: http://www.childrensdefense.org.

Grandparents can become isolated but should seek out services and help when needed. JoAnn

I noticed in my post on trust and special education personnel’s subjective opinions that I left out some important information about subjective opinions. This is the reason I decided to write a Part II.

While standardized testing is important for determining disabilities, and also determining if a child is making progress, I left out an important issue.

School districts need to show parents data, to determine if a child is making educational progress, not just subjective opinions of special education staff. How is this data collected--by conducting progress monitoring? According to the National Center on Student Progress Monitoring sponsored by the US Department of Education (http://www.studentprogress.org), “Progress monitoring is a scientifically based practice that is used to assess students academic performance and evaluate the effectiveness of instruction. . . “ Pre testing at the beginning of the school year and post testing at the end of the school year can be considered a type of progress monitoring; but should be included with monthly progress monitoring. This is critical so that the curriculum and services can be intensified or changed, if a child is not learning, and showing appropriate progress.

 Information on progress monitoring measures can be found at:  http://www.rti4success.org/tools_charts/progress.php. As a parent you should insist on monthly progress monitoring as well as pre and post testing (pre testing at beginning of school year—post testing at end of the school year).  Ask for progress monitoring information in writing, and make sure that this is listed in your child’s IEP.

Core National Standards:

When discussing your child’s educational progress make sure that your child is being held to the same Core academic standards as students without disabilities. This will keep the expectations high and give your child a great chance for educational success.  The difficulty has been that every state had their own standards, some low and some high. There is a national push for Core Standards. More info can be found at: http://www.corestandards.org/. Currently, 43 states have passed the Core National Standards, which is fantastic! These standards are set high, and it is very clear that these standards apply to all children, even children with disabilities.

Outside help for children:

Many children with disabilities are making educational progress because their parents are spending hour after hour, teaching their child at home, and assisting them with their homework. School personnel often refuse to take this into consideration.  In an OSEP policy letter dated January 13, 2010 it states: “. . . It has been the Departments long standing position that in general it would be appropriate for the evaluation team to consider information about outside or extra learning support provided to the child, to determine whether the child’s current academic achievement reflects the service augmentation, and not what the child’s academic achievement would be without such help.”

I have heard special education personnel state that a child is doing “fine” in school and does not need special education. Of course I address the subjective nature of these comments, but I also bring up help that a child receives at home or from private service providers.

I once advocated for a little girl of a single mother, who was spending hours every evening helping her daughter with her homework. I figured out pretty quickly what was happening with the little girl. The child was struggling so much in all academic areas, that she did not complete her work at school, so the teacher sent it home. Bringing the time spent at home to the schools attention fell on deaf ears. So I told her to stop helping her daughter for hours—only one hour a night—and then send the work back! I also recommended writing on the homework how much help she gave her daughter. The mom was very reluctant to do this, but eventually agreed.  It took only about a week for the school to wake up, and realize that the child needed special education services. While what I asked the parent to do is drastic, unfortunately some situations require drastic measures.

To determine educational progress ask for data from progress monitoring, and do not listen to subjective comments made by special education personnel. Grades are also subjective and should never be used. JoAnn

I have been thinking lately about trust and school personnel giving subjective opinions. Every parent who I know came into special education with trust toward school personnel. Many parents, including myself trusted special education personnel when our children were young, because we thought that they cared for our children, and knew what was best for them. We continued to trust them when they made blanket statements about our children’s abilities and/or disabilities, but hopefully this will be your wake-up call!  If you are a parent of a child with a disability reading this blog do not trust special education personnel that make blanket statements and opinions about your child’s abilities without backing up their statements with standardized testing (to the amount possible).

I learned this early with my son Shaun, who is now a tall 25 year old. When Shaun was 2 and ½ years old he was diagnosed with severe ADHD and speech delays. When he was 6 years old he was reevaluated for special education. It was obvious to me, that Shaun may have other disabilities that would explain his academic difficulties. I believed after a lot of research that Shaun was also Learning Disabled. I became convinced of this especially when I learned that 75% of children with ADHD have learning disabilities! I approached the school before the evaluation and made very clear that I wanted Shaun tested for Learning Disabilities. I brought it up at the testing meeting, and if I can remember correctly I wrote them a letter also. An LD teacher was part of the evaluation, but I did not learn until much later that she actually never tested Shaun for Learning Disabilities.

 I was shocked when I went to the IEP meeting and found a box of Kleenex in the middle of the table—it was my prediction that we were in big trouble, and I was not wrong.

The school psychologist tried to convince me that my son had Mental Retardation and not Learning Disabilities; which I absolutely did not agree with!! I ran out of the room crying only 1 of 2 times I ever did that.  Remember I did not know at that time that the LD teacher had never tested him—so I was really confused about how the school could say that my son’s IQ was so low, when it was obvious that it was not. When I disagreed with the opinion of the school psychologist he tried to say that I was in denial and needed to face the truth.

 This is when I first learned about the importance of Independent Educational Evaluations (IEE), which I took my son for shortly after the school testing. The Clinical Psychologist found that my son did have several Learning Disabilities, and that the school had lost over 50 points of my son’s IQ (They said his IQ was 70 plus and the independent evaluator found that his true IQ was over 120).

I immediately sent a copy of the evaluation to the school and asked for an IEP meeting. I will never forget the reaction that I received from the special education personnel when I walked into the IEP meeting. The special education director looked like she was going to burst in tears when she asked me what I wanted! I told her that I want my son found eligible under Learning Disabilities, and I want him taught to do academics just like other children—they gave me everything I asked for and changed his “label.”

Since that time, I have dealt with this issue many times with other children. Special education personnel making blanket statements and opinions, about children’s disabilities or abilities, without testing the child. Below are two further examples:

1. School psychologists stating that a child does not have Autism, without giving them a rating scale, or doing any other type of evaluation. What I mean is using an ADOS which stands for Autism Diagnostic Observation Scale, etc. I am not specifically recommending this type of evaluation, just giving examples of types that are available. I actually prefer the CARS, because it is easy for parents to fill out and easy for trained personnel to score.
2. Special education personnel stating that a child is making academic progress, without standardized testing to prove it. I have seen this many times and it causes harm to children; that need more intensive special education services.

 Parents do not accept subjective opinions about your child’s disabilities or academic and educational progress, only accept standardized testing! Why? It is my opinion that many school personnel are biased and do not want to provide more intense special education services—so they state that the child is making progress, even though they may have no standardized testing to prove the progress. Many school personnel also state that grades can determine progress, which in my opinion, is not true. Grades are subjective and should not be used to determine if a child is making progress. Though downloading your states core standards, and using those to determine progress, is less subjective than grades.

For diagnosis of some disabilities, you may need to depend on a person’s experience or training, but I would not depend on school personnel for this; only independent personnel. I recommend independent evaluations with either a Clinical Psychologist or a Neuropsychologist. Opinions are subjective and can be changed by pressure from school administration or by other special education personnel.

Standardized testing is the way to determine if your child has a particular disability (whenever possible) not a subjective opinion from special education personnel. Even if they test a child for a particular disability, they may not test the child correctly. For Example: A child that is suspected of Dyslexia must be tested in specific areas for the testing to be accurate.

A wonderful document that I use often that contains great information about school evaluations as well as independent evaluations  is entitled “How to Prepare a Psychoeducational Evaluation Report &Testify as an Expert Witness”by  Margaret J. Kay, Ed.D, NCSP, DABPS, Licensed Psychologist, Nationally Certified School Psychologist. Dr. Kay has given me permission to reprint some of her document in this book. Dr. Kay can be reached at: http://www.MargaretKay.com or 717-569-6223.

Dr. Kay States that: . . “Psychologists who are aware of current, best practice guidelines for assessing dyslexia know that the assessment must contain measures of phonological processing, rapid naming, phonological memory, nonsense word reading, real word reading, reading comprehension, spelling and written expression.”

I have seen many testing for Dyslexia that does not test the areas that Dr. Kay mentions. How can the testing be accurate if the needed tests are not conducted?

Parents, do not trust school personnel who make blanket statements about your child’s abilities and disabilities, without conducting appropriate standardized testing on them. Children should also undergo progress monitoring on a regular basis to allow school personnel to change curriculum if a child is not learning.

Would love to hear your comments, questions and experiences in this area! Feel free to leave a comment! JoAnn

Hello: Welcome to my new blog--Special Education Spotlight--shining the light on truths and deceptions in Special Education. For those new to me and my mission to educate parents on how to successfully advocate for special education for their chilld, a short bio is below:
 
  I live in Bradley Illinois (small town--middle of Illinois)  and have 2 fantastic dogs. I have three great adult children Angelina almost 30, Courtney age 27 and Shaun age 25. I came to special education in the way most of us do--Angelina and Shaun have disabilities. In 1984 when Angelina was 3 I was thrown into special education head first! I had no idea what was going on, and that I even had rights. A wonderful mom who was further along on her journey educated me about the Education for all Handicapped Children Act (which is what the federal law was called before IDEA). I never looked back, advocating for my children and other peoples children for over 20 years. I have been very lucky to be successful in my advocacy--not making a lot of school friends--butalways fighting for the child! 

   In 2006 I began thinking about writing a book on special education--to educate a new generation of parents, about the law and advocacy techniques. I realized that most of my phone calls were about lies that were being told by some special education personnel--notice I said some! Disability Deception was born--took me about a year to write and self publish. The book was released in September 2007! 
  
   I have been humbled and thrilled by the reaction to my book! Parents E mailing me telling me how refreshing to finally find a book about special education that is honest! One mom in Texas E mailed me and told me that I saved her sanity. I E mailed her back because I had lost my sanity a long time ago, and wondered how I had saved hers! She said that she had a perpetual pit in her stomach every time she had a meeting with special education personnel about her son with a disability--but she did not know why. After reading my book she said she figured it out--the pit was because she was being lied to--and her subconscious was letting her know! Since that time I have been told by a few parents that it is the best advocacy book they ever read (not sure I agree with that), and that they recommend it to other parents. 
 
   I want this blog to be an addition to my book! I want to address questions, specific subjects and even give some advocacy advice. I also want to keep you up to date on my new projectsm and get some input on what issues are important to you as a parent of a child receiving special education services.
  
  If you want the truth about special education, and you want to learn how to advocate for your child--then this blog is for you!
 
  My first topic will be about special education transportation as I seem to get a lot of questions about that. Please send your questions about transportation, and also any succes stories you have about getting your school to provide transportation for your child! Thank you in advance! JoAnn Collins