Why Did the Chicken Cross the Road?

Some of you have noticed a change in tone here on this blog. My anger, frustration, and hang ups don't appear to be the driving force here. Have I changed?

I met a boy a few days ago. His name is Aiden Crane. His father was kind enough to share his story on a blog called the "Useless Tree" and I came away from the experience looking at things a little bit different. For me, connecting with my past to help see the future provides healing. The healing came in the form of the "Tao te Ching" a book that has helped me rediscover myself and how I can be a better mother.

I read this book back in college and had to immerse myself into the history and culture before I could fully grasp it's meaning. I remembered when I first discovered it's origin and the time in which the authors lived. I learned it was written in response to the times in the way all wisdom is born and transferred. A time in history, in all our histories past or present, where people resort to hoodwinking to get things done.

I decided it is overestimated the amount of wisdom that oozes out of a person once they have found themselves the victim of hoodwinking, until we listen to a comedian. The story of Lao Tzu, for example, when Gongfutzi comes calling, is really very funny. You see, Gongfutzi travels a long distance to learn the meaning of life and the way from Lao Tzu, an old sage and presumed to be an author of the "Tao te Ching." Lao Tzu is crabby and irritated by this request.

Lao Tzu tells Gongfutzi something like by the time you find the answer, you'll be dead, so don't worry yourself. I think this is when Kongfuzi changed directions in his life because he couldn't accept this as an answer. There had to be more for him to life, a special path, and as a result he transformed into the person known today as Confucius.

I'm not implying to have any wisdom here on this blog. But it was the connection I made to the "Tao te Ching" and to Aiden that helped me see a new beginning and the value of my experiences as a mother, negative and positive, without compromizing my integrity or the integrity of others.

NICHCY LINK FOR EXPLANATION OF DISABILITY DEFINITION

Visit the NICHCY website to find out if your child is eligible for special individualized education services.

MR/dd new Appointees & Holding Strickland Responsible

Michael Rench was appointed as DD for the Div. of Community services by John Martin who was appointed as the new Director of ODMR/dd by Governor Ted Strickland. We need to write Gov. Strickland to make sure he does not close any more MR/dd facilities otherwise he will not be elected into a second term by family and friends of people who will be affected by the decisions his appointees make:

Office of Governor-Elect Strickland
77 South High Street
Riffe Center, Suite 1948
Columbus, Ohio 43215(614) 728-4900

What he needs to know is that the closing of MR/dd facilities, forced mainstreaming, and the creation of new satellites makes no sense because of the following:

1) MR/dd was closed because of decline in attendance but suddenly there is an increase of new satellites opening where the cost is being duplicated many times than what it cost to keep a MR/dd therapy center open.

2) Kids are still being excluded from their peers at their disctrict school; they are included at MR/dd schools

3) Kids were removed from MR/dd therapies throughout Ohio without notification and due process; parents can prove now that services are not even close to what the kids were getting in the form of integrated therapies at MR/dd.

4) Many parents are not aware that they are paying for a tax levy for which their child cannot benefit. For example, property owners are paying for MR/dd through their property taxes for services that are being charged to their schools. Many schools cannot afford these charges so many of the children were sent back to their district school even though their parents are probably paying for MR/dd; MR/dd creates "traveling therapy" within the district calling this "service" but it does not replace what was taken away from the kids.

5) Parents in Cincinnati were not told they have an option to attend a MR/dd therapy school and as a result their children's individualized education rights are being violated. Parents aren't even told what they are entitled by law by any of the school districts in the form of AT; parents have to get this information from a lawyer.

Assistive Technology

It was a pretty good meeting. Most parents in attendance were not aware that Assistive Technologies are the responsibility of the school and should be identified before the IEP is written. What was pretty clear after this meeting is that most parents are still clueless about what schools are responsible for when planning individualized special education opportunities for their child.

If it is a medical condition that prevents your son or daughter from participating in the classroom, then the school MUST provide assistive technologies so your child can fully partipate in the classroom and not be dumped in special education room where they get babysitting services.

There is a real abuse going on in writing IEPs/504s and parents have to stay alert if they want their child to have the specialized individualized education to which they are entitled by law.

Contact Sue Schindler at 821-2113 at Hamilton Co. Arc if you have any questions about getting the information from this meeting. One mother in attendance was telling us that her son is being denied a Velcro ASL from her district school. This school is in violation of this child's civil rights.

If you have specific questions about your 'child's legal rights, contact the Office for Civil Rights, UDE, 600 Superior Avenue East, Suite 750, Cleveland, OH 44114. Telephone 216-522-4970.

Also contact KHildebrant@olrs.state.oh.us if you need any of the information from this meeting. Please put in the subject box: Drake Conference AT Meeting otherwise she will not repond.

ASSISTIVE TECHNOLOGY: WHAT ARE THE RESPONSIBILITIES OF THE SCHOOLS DISTRICTS AND FAMILIES

FIND OUT EXACTLY WHAT THE RESPONSIBILITIES OF THE SCHOOL DISTRICTS AND FAMILIES. KRISTIN HILDEBRANT OF OHIO LEGAL AID WILL BE AVAILABLE...

CONTACT HAMILTON COUNTY ARC -- SUE SCHINDLER AT 821-2113 EX. 112
TO ATTEND THIS INFORMATION SHARING MEETING
AT DRAKE CONFERENCE CENTER,
THURSDAY, MARCH 15TH AT 7:20

504 VERSES IEP

http://addadhd.suite101.com/article.cfm/iep_versus_504

continuum of alternative services

Here's an explanation as it relates to the federal law:

http://specialed.principals.org/discidea/searchregs/300subpartE/Esec300.551.htm and also look at http:///nichcy.org/idealist.htm

If you find the IEP to be ineffective and your child is not benefitting from being at school or if the school cannot provide the individualised special education according to your son or daughter's individual need, a school/parent can elect to an "continuum of alternative service" even if it's outside of the district. Other parents use it to "homeschool" their child.

If a parent finds a service that can fulfill their son or daughter's specific IEP goals that the school cannot, through "continuum of alternative service" the school must provide this by law.

This is why it is absolutely IMPERATIVE THAT PARENTS & CARE TAKERS GET THEIR DUCKS IN ROW before they walk into the IEP meeting. You must know every inch of your child' spectrum, disorder, medical issue, because the schools do not know. They are not medical experts. They are education experts. They have education and mainstream models. But you might have a child that does not fit into their "model" here and needs something else in the form of an individualized special education.

The issue right now is that schools have been "regulated" at the federal/state level serve all special populations of children so some schools can choose to give you a "drop dead no" even if you or an advocate find an alternative that is the exact match for your son or daughter's needs. Only when a parent can prove that the school is only meeting this regulation on paper, not in the delivery of the IEP, can a child be eligible for alternative services.

Keep in mind, federal and state "regulations" cannot meet every "individual" need so there is wiggle room. Parents have the right to due process. I've read discussions where parents have challenged their school district based on the IDEA federal law set up for these special exceptions, hence the term "individual" and they have had good results.

Some schools do an outstanding job offering mainstreaming opportunities, special education services, least restrictive environments, and fulfilling IEPs, and some do not. I have been in special education environments that met the individual needs of a child while also providing special education opportunities. On the other hand, I have seen (I kid you not) 18 kids sitting in one room with one teacher where half were zoning out doing absolutely nothing.

I had to prove my child would not benefit from the school's definition of "least restrictive environment" and all the other definitions, labels and acronyms they have (I'm trying to be funny here...) in order to secure services elsewhere. I actually learned how to do this from a homeschool book.

I asked the school "you mean I can take my child out of school to be "homeschooled" and you would call it "services" but I can't put him into this special school where he can receive these same "services" as home?"

Hmmmmmm.

In Hamilton Co. Tennessee, a family sued the school because they wanted their son to attend this special program specifically for Autism. The schools said "no way." I think the parents won but it went into appeal... If you visit the FAPEPAGE and Wrightslaw they list the court cases.

STEVE?

THANK YOU STEVE FOR DROPPING BY THE BLOG.

YES, YOU WERE RIGHT ABOUT THE ARTICLE INRE "TRUST, GUARDIANSHIP, POA, AND OTHER STUFF." I MADE THE CORRECTIONS AND NOTIFIED THE MOTHER WHO SUBMITTED THE POST.

AS YOU CAN SEE, WE'VE UPDATED THE INFORMATION HERE AND HOPE THE NEXT TIME YOU DROP BY, YOU CAN GIVE US MORE ADVICE.

KIND REGARDS,
Elisabeth's Really Big Army of Moms, Friends, Advocates.

Compiled by National Dissemination Center for Children w/ Disabilities

Information here relates to the latest authorization of IDEA 2004. In other words, the statute as it was passed by Congress and signed by the President in 2004, and implementing regulations, published August 14., 2006.



VISIT http://nichcy.org/idealist.htm

Special Needs Trust AND What the Government has to say ...

Special Needs Trust

The only reliable method of making sure that the inheritance actually has a chance of reaching a person with a disability when he or she needs it is through the legal device known as a Special Needs Trust (SNT). The SNT is developed to manage resources while maintaining the individual's eligibility for public assistance benefits. How is this done? Simply put, the family leaves whatever resources it deems appropriate to the trust. The trust is managed by a trustee on behalf of the person with the disability.

While government agencies recognize special needs trusts, they have imposed some very stringent rules and regulations upon them. This is why it is vital that any family contemplating using a SNT consult an experienced attorney -- not just one who does general estate planning, but one who is very knowledgeable about SNTs and current government benefit programs. One wrong word or phrase can make the difference between an inheritance that really benefits the person with a disability and one that causes the person to lose access to a wide range of needed services and assistance. As an illustration of this, suppose that the trust instructed the trustee (manager) to pay the person with the disability $100 a month for life. Such a mandatory income might jeopardize government benefit programs, which only allow him or her to have $70 of income each month.

The first thing that may come to mind for most families who have had experience with government benefits is that the government says that a person with a disability cannot have a trust. Correct. However, the special needs trust does not belong to the person with a disability. The trust is established and administered by someone else. The person with the disability does not have a trust. He or she is nominated as a beneficiary of the trust and is usually the only one who receives the benefits. Furthermore, the trustee (manager) is given the absolute discretion to determine when and how much the person should receive.

Given the government's stringent requirements it is critical that the trust be carefully worded and show clearly that the trust:

is established (grantor, settlor) by the family (persons other than the person with the disability);

is managed by a trustee (and successor trustees) other than the person with the disability;

gives the trustee the absolute discretion to provide whatever assistance is required;
should never give the person with the disability more income or resources than permitted by the government;

must be used for supplementary purposes only; it should add to the things provided by the government benefit program, not supplant (replace) them;


defines what it means by supplementary/special needs in general terms, as well as in specific terms related to the unique needs of the person with the disability;

provides instructions for the person's final arrangement (families should assume that when the individual with the disability dies no relatives will be alive who know what the mother and father would have wanted);

determines who should receive the remainder (what is left over) of the trust after the individual with the disability dies;

provides choices for successor trustees -- people or organizations that might be able to take a personal interest in the welfare of the person with the disability;
and protects the trust against creditors or government agencies trying to obtain funds to pay for debts of the person or the family.

Since the trust is a legal arrangement that is regulated by the laws of your state, there will be other sections that your attorney may need to insert. It is important to know that, while the majority of public assistance funds come from the federal government (which provides guidelines for SNTs), it is the responsibility of each state government to regulate trusts and administer the federal benefits. As long as the federal guidelines are followed to the letter, the state will accept the SNT, and the trust will fulfill its function.

What the Social Security Administration Has to Say About Special Needs Trusts

The Social Security Administration's (1990) publication Understanding SSI discusses special needs trusts as follows:

How do resources in this type of trust count in the SSI program?
Money or property in this type of trust for an SSI beneficiary...does not count toward the SSI resource limits of $2,000 for an individual.

How does money from the trust affect the individual's SSI payments?
Money paid directly to the providers for items other than the person's food, clothing, and shelter does not reduce SSI payments. (Items that are not "food, clothing, or shelter" include medical care, telephone bills, education, entertainment.)

Money paid directly to the providers for food, clothing, and shelter does not reduce the individual's SSI payments -- but only up to a limit. No matter how much money is spent for these items, no more than $155.66 (in 1991) is subtracted from the individual's SSI check.
Money paid directly to the individual from the trust reduces the SSI payment. (U.S. Department of Health and Human Services, 1990, p. 46)

"Her Brother's Autism" by Karen Olsson

It is a daily struggle balancing out our responsibility and the interdependence our children have on others when they are not in our care. Karen Olsson's article "Her Austic Brother" featured in today's NYTimes Magazine brought a clarity to the role parent's play in their child's life and the associated experiences, both negative and positive, without sacrificing the integrity of the family and the ongoing challenges they face sixty seconds of every minute of every hour, every day, in the case of children within the spectrum of autism. Her article was more than a "case study." It was badly needed breath of life for a society in need of reconnecting to their own humanity.I hope everyone will take the time this week to visit the library to read this article about a family experience with two members diagnosed with Autism. This is journalism at its finest moment. http://www.nytimes.com/2007/02/18/magazine/18autistic.t.html?pagewanted=6&n=Top%2fNews%2fHealth%2fDiseases%2c%20Conditions%2c%20and%20Health%20Topics%2fAutism&_r=1

U. of Maine & Related ACC Research Information

This is the group we hooked up with when Elisabeth was born. Amazingly, we were included in a study through UCSF to identify the sequencing and location of the gene that prevents the CC from developing and possibly effecting other parts of the brain.

We were able to isolate the ACC to genetics given what we know about her development. They also need money so feel free to make a contribution:


http://www.umaine.edu/edhd/research/accnetwork.htm

Spectrum School for Autism ...

Here is a spectrum school from which you can get current methodologies that are proven successful ...

http://www.spectrumschools.com/services/autism-program

Autism & IEP

http://www.autism-pdd.net/iep.html

Continuum of Alternative Services Information

If by chance an alternative is found and the school authorizes placement ... which means if you find a place that services your child's individualized special education outside of what the district school offers:

Regulations by Section and Attachment 1 (Analysis of Comments and Changes)
Subpart E-Procedural SafeguardsLeast Restrictive Environment (LRE)
§300.551 Continuum of alternative placements.

(a) Each public agency shall ensure that a continuum of alternative placements is available to meet the needs of children with disabilities for special education and related services.
(b) The continuum required in paragraph (a) of this section must-

(1) Include the alternative placements listed in the definition of special education under §300.26 (instruction in regular classes, special classes, special schools, home instruction, and instruction in hospitals and institutions); and

(2) Make provision for supplementary services (such as resource room or itinerant instruction) to be provided in conjunction with regular class placement.

(Authority: 20 U.S.C. 1412(a)(5))

Analysis of Comments, Discussions and Changes from Attachment 1

Comment: A number of commenters requested that the regulation include a statement that a child does not need to fail in each of the less restrictive options on the continuum before they are placed in a more restrictive continuum placement that is appropriate to their needs. These commenters felt that this was needed to insure that children get appropriate services in a timely manner. Some commenters requested that the regulations specify that the placement appropriate for children who are deaf must be in a setting where the child's unique communication, linguistic, social, academic, emotional, and cultural needs can be met, including opportunities for interaction with nondisabled peers.
Discussion: The regulations do not require that a child has to fail in the less restrictive options on the continuum before that child can be placed in a setting that is appropriate to his or her needs. Section 300.550(b)(2) of the regulations however, does require that the placement team consider whether the child can be educated in less restrictive settings with the use of appropriate supplementary aids and services and make a more restrictive placement only when they conclude that education in the less restrictive setting with appropriate supplementary aids and services cannot be achieved satisfactorily. New statutory changes to the IEP development process make clear that the IEP team considers the language and communication needs, opportunities for direct communication with peers and professional personnel in the child's language and communication mode, academic level and full range of needs, including opportunities for direct instruction in the child's language and communication mode in developing IEPs for children who are deaf or hard of hearing. These requirements, which are included in the regulations at §300.346(a)(2)(iv), should address the concerns raised by the commenters. In light of this change, further regulation is not necessary.
Changes: None.
Comment: A number of commenters expressed concern about the note following this section regarding home instruction. Some stated that the note should be struck because it implied that home instruction was an appropriate placement for all medically fragile children and that this was contrary to the requirement that placement be determined based on the individual needs of each child. Some asked that the regulation limit home instruction to those medically fragile children whose treating physicians have certified are not able to participate in a school setting with other children.
Others disliked the note because they believed that home instruction should be available in other instances when the IEP team determines that such a placement is appropriate and should not be limited by type of disability. Some commenters wanted the note to be revised to make clear that home instruction could be available for children with behavior problems and those in interim alternative educational placements because they had been suspended or expelled from school for disciplinary reasons if the IEP team determined that it was the appropriate placement. Others asked that the note should be revised to caution about the inappropriate use of home instruction as a placement for children suspended and expelled, unless requested by the parent for medical, health protection, or diagnostic evaluation purposes. Some commenters asked that the note make clear that discipline issues should be handled through the provision of appropriate services in placements other than home.
Some commenters asked that the note be modified to state that home instruction services may be appropriate for young children if the IEP/IFSP team determines appropriate. Other commenters asked that the regulations make clear that home instruction services are an appropriate modification of the IEP or placement for incarcerated youth who are being kept in segregation, close custody or mental health units.
Discussion: Home instruction is, for school-aged children, the most restrictive type of placement because it does not permit education to take place with other children. For that reason, home instruction should be relied on as the means of providing FAPE to a school-aged child with a disability only in those limited circumstances when they cannot be educated with other children even with the use of appropriate related services and supplementary aids and services, such as when a child is recovering from surgery. The implication in the note that placement decisions could be based on the type of disability of a child was unintended.
Instruction at home may be the most natural environment for a young child with a disability if the child's IEP/IFSP team so determines. ŒHome instruction' may be an appropriate modification of an IEP or placement under §300.311 for incarcerated youth who are being kept in close custody, or segregation or in a mental health unit. The issue of home instruction for children with disabilities who have been suspended or expelled for behavior that is not a manifestation of their disability is addressed under §300.522.
Changes: The note has been deleted.

When School and Parent Disagree

Interesting ...
http://www.schwablearning.org/articles.aspx?r=1132

ADD/ADHD IEP(Individual Education Plan) Information

Here are a few questions that you need to ask at the IEP Meeting:

How is "academic success" defined for your child?

If it's not entirely academic, then what is it? How will they be spending their time while the other students are focused on academics? What will your child be doing most of the day?


What happens if the IEP does not work? How much time are we talking before a new IEP can be implemented?

What kind of training do classroom teachers receive for diffusing behaviors in the classroom?

What is the plan in the event a behavior emerges that puts the student or other students and staff in danger?

What will your child be doing at school that will benefit their own abilities?

What kind of assistive technologies and methodologies are currently being used and what kind of training will teachers receive?



Here's a site ... http://www.helpguide.org/mental/adhd_add_teaching_strategies.htm

http://addadhd.suite101.com/article.cfm/iep_versus_504



Before you consider developing an IEP for your child, as a parent or caretaker, you should be asking what it is your child will gain from his or her special education experience at school because everyone on your child's IEP team must be in agreement in defining "academic success" based on your child's ability. If it is not "academic" than what is it? How will the behaviors be diffused in the classroom?


When looking over articles about writing IEPs, keep in mind that federal law says that our children are entitled to receive a special education by their own design according to their own abilities. There is nothing in the federal law that states all children must follow the standard academic curriculum or that their IEP is restricted to what is going on in the classroom.

The whole point of having special education laws in place was to make sure that each child with special needs is guaranteed a special education according to his or her ability.


In a pre-planning IEP meeting, consider different teaching methodologies if your child is diagnosed with ADD/ADHD or Autism Spectrum Disorder or any other label that prevents them from fully participating in a classroom with their biological, typical developing peers. Bring with you to meetings, advocates who works directly with your child or other children who have a similar medical diagnosis, developmental patterns, etc.


Remember, the goals of the Individual Education Plan (IEP) for every student does not have to be linked to academic success unless the student with special needs can follow academic curriculum.

If the student with special needs cannot follow the academic curriculum then the IEP team must be in agreement and have an alternative plan in place that matches or follows the child's ability.


IEP GOALS:

The IEP goals should be developed with the following criteria:

realistic
attainable
measurable
challenging

Before setting goals the team must first determine the present level of performance using various assessment tools, the needs must be clearly and specifically defined. When determining I.E.P goals consider the student's ability.

Is the student in the least hindering or most productive environment? Do the goals coordinate or clash with the regular classroom activities and schedules? What special adaptions are being made if they follow the general curriculum? Is there an alternative plan if one is needed?

After the goals, academic or alternative, have been identified, it is then stated how the team will help the student to achieve the goals, this is referred to as the objective. Each goal must have a clearly stated objective how, where and when each task will be implemented. Define and list any adaptations, aides or supportive techniques that may be required to encourage success. Clearly explain how progress will be monitored and measured. Be specific about time frames for each objective. Expect goals to be achieved at the end of an academic year. Objectives are skills required to achieve the desired goal, objectives should be accomplished in shorter intervals.

Team Members: I.E.P. team members are parents of the student, special education teacher, classroom teacher, support workers and outside agencies involved with the individual. Each member of the team plays a vital role in the development of a successful I.E.P.

Education Program Plans can become overwhelming and unrealistic. A good rule of thumb is to set one goal for each academic strand or for each alternative based on student's individual ability. This enables the teams manageability and accountability to ensure that resources are available to help the individual achieve the desired goals.

If the student I.E.P meets all of the student needs and is focused on skills for success, results and outcomes, the student with special needs will have every opportunity to develop according to his or her ability no matter how challenging their needs may be.

Agenesis of the Corpus Callosum

Here's the link with information:

http://www.ninds.nih.gov/disorders/agenesis/agenesis.htm

A Question that Deserves an explanation ...

I found this question on http://www.cincymoms.com

Most schools use a standard developmental chart to measure a child's cognition and physical development. What if your child cannot be measured here? Aren't they adding their own bias about child development and what is good for your child?

What if you could demonstrate that your child does not fit into their mold or idea of what is good for the child? Isn't this where your pediatrician can help or any of the experts who made the diagnosis on your child's behalf?

The entire education system is based on measuring one child's cognition to what most
kids can do at a particular age. What does this have to do with your child if they are wired differently?

The education system never made any sense to me when it comes to providing education to our children with special needs, but I am a willing student here.

Visit http://www.cincymoms.com

A new discussion network developing online at http://www.cincymoms.com for Moms. There appears to be a lot of frustration among parent who have children with special needs (or labels) not getting the individualized education. The managing editor is Karen Gutiérrez who works for the Kentucky Enquirer.

Some parents have even expressed that their own school district is only giving them "lip service," providing IEPs that benefit the school and not the child, and not following through on the IEPs. How could this be?

Look under the two categories of "education" and "health."