Tag Archives: Heller

Meeting Minutes: March 20, 2014

Highlights from the meeting:

Our meeting today included a presentation by Dr. Heller regarding her recent research on how teachers can more effectively manage situations where a student has a terminal illness and/or when a student death occurs. Her presentation highlighted information about the grieving process, and how many people grieve differently, as well as the stages of grief that many experience.

She also discussed how teachers can manage communication with their terminally ill students, and their peers within the school setting. We learned that there are various ways of going about this while maintaining a positive and encouraging environment for the student while they are school. We also discussed how other family members, especially siblings may need support if their sibling is experiencing a terminal illness. These siblings will need a support system as well in the school setting.

Dr. Heller’s research determined that while teachers are feeling much more supported regarding students’ terminal illnesses and death than they were more than twenty years ago, there is room to grow. It is Dr. Heller’s wish that teachers, students, and school staff are well supported in order to deal with these sensitive topics in the school setting, well before and after a student has died from a terminal illness. The presentation was very informative and prompted an engaging conversation among the group.


We are pleased to announce that Renee Dawson, itinerant OI teacher in Cherokee County, is going to join the consortium leadership team. She brings a great deal of knowledge to the table as well as a great deal of experience in professional development.

Here is a link to access the Medicaid Fair flyer that is being held on April 2nd in Fulton County, please share this information with your students and their parents.

Resource Fair 2014 P2P flyer

The consortium also discussed the possibility of hosting an OI symposium next year. This would allow OI teachers and other related professionals the opportunity to meet other OI teachers, and to share information and resources related to out field. If you are interested in assisting with the planning of this event, please contact Judy Bytheway at: bytheway@fultonschools.org.

Other announcements included the possibility that we are going to gain permission to receive Professional Learning Units for our meetings, as well as any other activities that we organize, such as a symposium. I will keep you posted on any developments regarding our PLU status.

Available OI Positions:

There are currently 1-2 OI positions available in the Gwinnett County School System. Please contact Eva Parks at: eva_parks@gwinnett.k12.ga.us if you are interested if you are seeking an OI position. There are also 1-2 OI positions open in the Columbia County School System in Evans, Georgia, located near Augusta. Please contact go to this web address to view and apply for the positions:


Lastly, the blog has been recently updated to include a list of helpful apps for our students and teachers. Please take a look at these apps under the “Useful Apps” tab at the top of the blog. Please feel free to share the blog with other teachers so that they can access this resource. Also, please share additional apps that you find helpful.

We are so appreciative that so many people were able to attend the meeting yesterday. We had 19 members attend from several counties in the metro area. Thank you!

The next meeting on May 15th, 2014 will be held at the Tools for Life Facility at Georgia Tech University. I will provide more information regarding directions and parking in the next few days.

If you have any questions, please contact me at bytheway@fultonschools.org, or use the “Contact Us” tab at the top of the blog.

Thank you,

Judy Bytheway

March 20th Meeting in Cherokee County

About the meeting:

Dr. Kathryn Heller will be presenting her findings from her recent research regarding issues surrounding students with terminal illnesses. We were able to complete surveys for her for the purpose of her research, as well as many other OI teachers and related service providers around the country. The article has valuable information regarding issues related to students with terminal illnesses and how we can effectively handle these situations. This is such a huge part of our roles as OI teachers, so the information will be really helpful. If you have a chance to read the article before the meeting, that would be great!

Here is the link to the article:


You can download the article if you scroll to the bottom of the screen.

A couple of notes:

If you would like for me to add an OI teacher to this e-mail list that may benefit from our meetings, please send me their e-mail address. I am trying to keep the e-mail list as updated as possible.

The meeting will be held from 1:00-3:45 p.m.

There is another meeting that is going to be held in that room at 4:00, so we just need to make sure we exit the room by 3:45.

I hope that as many as people as possible can make the meeting!

I am working on finding a more central location for everyone for next year’s meetings. Our next meeting is at the Tools for Life Facility at Georgia Tech. We will be touring the facility so that we can become more familiar with the services that are offered there.


Notes from March 2012 Meeting: IEP versus 504 Plans & Brittle Bone Disease

OI Consortium

Gwinnett County Instructional Center

March 15, 2012

Presentations by:

Mr. John Shaw

Director of Legal and Policy Issues,

Department of Special Education and Support Services,

Gwinnett County Public Schools

Dr. Kathryn Wolff Heller

Professor, Physical and Health Disabilities and Project Director,

Georgia Sensory Assistance Project, Georgia State University

504 vs. Special Education and Osteogenesis Imperfecta

Presenter:  John Shaw – 504 vs. Special Education

504 is a nondiscrimination statute that went into law in 1973.  This was initially an employment piece of legislation designed specifically to help Vietnam veterans get jobs.

Since 1973 it has been politicized

There are Crossovers between 504 and IDEA:

IDEA = the federal statute for special education

Regulations are through the U.S. Office of Civil Rights.

504 borrowed the concept of FAPE and brought it into 504.  It means students with disabilities must be given a free education, and appropriate as determined by an IEP team.

504 covers people from birth to death and includes:

-Child-Find responsibilities

-Comparisons between people with disabilities and without

-Parent Involvement

-Equal Education Opportunity

-Confidentiality of Information

-Participation in the least restrictive environment  (LRE)

-Evaluation, Placement, reevaluation, programming to meet individual needs

Under Section 504 a person with a disability is anyone who:

1.  Has a mental or physical impairment which substantially limits one or more major life activities (major life activities include activities such as caring for one’s self, performing manual tasks, walking, seeing, hearing, reading, concentrating, thinking, sleeping, speaking, breathing, learning, and working)

-Substantial Limitation.

Has a record of such an impairment

What does “substantially limits” really mean?

    • Unable to perform a major life activity that the average person can do.
    • Nature and severity of impairment
    • Duration or expected duration of impairment
    • Permanent or long-term impact

Note:  in some situations, such as a broken arm impairing one’s ability to write, the 504 may be temporary

Where do we start?

Hold an SST Meeting:

  1. Is the child a child with a disability?
  2. If yes, does the disability have a significant impact on learning?
  3. If yes, schedule a meeting to develop a 504 plan (Invite the parents to this meeting).

The job of the team is to determine accommodations to level the playing field, i.e. large print books, preferential seating in the classroom, etc.

When a student requires specially designed instruction – an IEP is necessary.

504 is about accommodations.

The 504 Committee:

The law is not specific on the members, but persons knowledgeable about the child, the meaning of the evaluation data, and the placement options.

Areas of Accommodations:

  • Seating arrangements
  • Homework assignments
  • Homework assignments records
  • Modifications in testing
  • Readers or taped materials
  • Grouping arrangements

Parent Rights under Section 504 (similar to IDEA)

Office of Civil Rights (part of the US Department of Education) has some newly defined parent rights on their website.

Procedural Safeguards under Section 504:

  • Notice
  • Opportunity for parents or guardian of the student to examine relevant records
  • Impartial hearing
  • Review Procedure

Family Educational Rights and Privacy Acts  (FERPA)  controls educational records.

Are we being “fair” to other students by providing accommodations to disabled students?

Are the appropriate staff members aware of the 504 plan, and is the plan working?

Review the plan regularly and make changes as necessary.

An IEP is necessary for a student who requires SPECIALIZED INSTRUCTION – this includes factors like the child missing school, pain, advocacy skills (may have learned helplessness, or may need something and will not ask for it).

Discipline and the 504 student:

  • Similar to the procedures set forth in IDEA
  • Suspensions of 10+ days are considered a change of placement
  • Students are entitled to oral or written notice of charges and the opportunity to tell their side before suspensions of 10 days or less.
  • BEFORE expelling a student for 10+ days, a manifestation determination meeting must be held.

ADA Amendments ACT of 2008

Expanded definitions of the following terms:

  • Substantially limits
  • Major life activities
  • Major bodily functions
  • Episodic or in remission
  • Mitigating measures
  • Regarded as

Under 504 a case manager must be designated.  Many schools have a 504 coordinator.  A logical person is assigned on a case by case basis, like a nurse, counselor, and teacher.

Accommodations are made, and related services are available in order for the student to access the accommodations.

Specially designed instruction includes functional life skills, and access to instruction.  The disability eligibility criteria and the evaluation process drive the decision making.

As a district, be mindful of over-representation and disproportionality, and your policies, practices and procedures.

Presenter:  Dr. Kathy Heller – Osteogenesis Imperfecta

Osteogenesis imperfecta is a condition causing extremely fragile bones.

Diagnosis involves several inherited conditions.

The reason the bones break – defective collagen fibers, less bone salts to get on the bone and stay on the bone (ongoing defect of the mutated gene).

Osteogenesis Imperfecta (OI)- typically normal intelligence

OI is an ongoing condition


  1. Bone fragility
  2. Scoliosis
  3. Limbs bowed
  4. Sclera of eye more translucent in some (due to the bluish collagen in the eye)
  5. Middle ear affected
  6. Teeth may wear down

Type 1

  • Mildest form
  • Mild bone fragility
  • Little or no bone deformity
  • Blue sclera
  • Fractures decrease after puberty
  • 20% develop scoliosis
  • Often mild hearing loss

Type II

  • Most severe form (almost never see in schools because the child did not survive)
  • Infant dies at birth or shortly after
  • Born with multiple fractures, limbs are short, bent, deformed
  • Difficulty breathing secondary to rib cage deformity

Type III

  • Severe bone fragility and bowing of limbs (often see in the schools)
  • Multiple fractures
  • Short stature
  • Triangular face
  • Spinal curve, brittle teach
  • Kyphoscoliosis (including humping back)
  • Respiratory complications
  • Often hearing loss

Type IV

  • Moderate bone deformity
  • May be improvement with onset of puberty
  • 1/3 able to walk with crutches by age 4
  • Wheelchair use for independence
  • Most have short stature
  • Sclera is white

Severity –

  1. Type I (mildest)
  2. Type IV = next mildest
  3. V, VI, VII
  4. Type III more severe
  5. Type II most severe – most often do not survive

There can be a lack of diagnosis, and with all the breaks parent/s may be accused of abuse until clear diagnosis.  Although detection of OI can be done through a number methods:  Clinical observations, X-rays, Biopsy, Genetic studies, Ultrasound.

Treatments – see handout

Educational Implications:

  • Know how to lift and handle
  • Activity restrictions, adapted PE
  • Mobility accommodations
  • Fire evacuation plans
  • Absences
  • Transportation needs
  • Personal aide
  • Have procedure in place when think may have a broken bone
  • Other accommodations/adaptations

An OI child MUST have a plan – some type of plan.

See Brochure:

Osteogenesis Imperfecta OI Foundation – Plan for Success

An Educator’s Guide to Students with Osteogenesis Imperfecta

Print this brochure for people in need of education on OI.


OI Issue:  Education

Special Education or 504 Plan for students with OI:

-Usually is questioned when the student has the mildest form of OI

-Lack of attention due to the pain component may be present

-It always comes back to the particular student – determination made on a case by case basis.

Note:  There are some students with the mildest form of Osteogenesis Imperfecta who are on 504 plans.  However, there are some for whom specialized instruction through an IEP is more appropriate and required.

Meeting Minutes: February 2011: The Role of an OI Teacher

OI Consortium

Dr. Kathy Heller: The
Role of the OI Teacher

What makes an OI teacher different than other teachers?

How are our students different than other teachers?

CEC Division Position Statement: Started in 1996. Dr. Heller
has written an article describing the critical role of the OI Teacher, as well as discussing the history of OI certification.
Dr. Heller’s article delineates the Specialized Skills in
Physical/Health Disabilities such as Legal Foundations, Characteristics,
Assessment, Instruction, Curriculum, and Learning Environment.  Students with physical and health disabilities are the most at risk of all the groups of students with disabilities if the teacher does not have the required knowledge and
skills.  They are not only at risk of not having an appropriate education with the needed modifications and adaptations, but the student’s well being may be at risk.
The student’s well being may hinge on the teachers’ knowledge and
ability to:  provide a safe environment to accommodate the student’s unique medical and health needs; recognize and report critical observations concerning changes in health status; recognize and respond quickly to emergency situations.

Study in 2001: It is frightening what teachers of students with Orthopedic Impairments did NOT know regarding their students’ needs. When a specialized certification is required, there is a demand for a specialized certification program at the university level.

However, when the certification is no longer required by the state agency, then there is no delivery of knowledge and specialized skills instruction for OI teachers. This knowledge is critical for students with physical disabilities.

2009: A National Panel was formed to determine what an OI Teacher does differently from other educators, and what unique skills are required to provide appropriate service to students with physical/health disabilities.  These skills are outlined in

“What Every Special Educator Must Know: The International Standards for thePreparation and Certification of Special Education Teachers” (The Council for Exceptional Children, 1996).  Dr. Heller provided handouts and review.

The initial certification in GA for OI is either an add-on
certification program, or a masters in OI.

Dr. Heller reviews the Standards for Teachers of Students
with Physical and Health Disabilities.

Standard 1: There are key differences in the skills and
knowledge that are specific to OI teachers, i.e. medical procedures (tube
feeding, CIC, etc.) as well as having the knowledge base regarding the
different disabilities (etiology, characteristics, impact on learning,
instructional strategies for specific disabilities);  for example: How Spina Bifida effects abstract reasoning skills in Math, inferential comprehension, etc.)

Standard 2: Secondary conditions are also highly possible in
students with orthopedic impairments, such as asthma, seizure disorders and
shunt malfunctioning.  It is important to know how these conditions interact with the primary orthopedic impairment and how these conditions further impact the student’s learning.

Standard 3: Individual Learning Differences- As OI teachers,
we must effectively determine how the orthopedic impairment affects our
students’ ability to learn and respond (communicate) with others. Students with
orthopedic impairments have varying means of response (eye gaze, foot
movements, etc.) that may not be traditionally looked upon as a reliable means
of response.  However, for our OI students it is necessary to systematically determine the most efficient means of response for the student so that the student may be able to interact effectively with their learning environment, teachers, peers, etc. Also, students with degenerative diseases have further psychosocial effects and emotional effects. It may be good to have a discussion regarding how to handle the emotional component of degenerative disorders with staff members, and how we can best support our students during this time. Additionally, students with medical conditions (seizures, ADHD) and post-surgery will have interactive affects from medication and pain management. Students who are nonverbal have to have specialized interventions regarding reading instruction, i.e. additional rehearsal for decoding using the Non-Verbal Reading Approach. Experiential deficits and processing issues are also a huge concern for our students.

Overall, we have to explore the interactive effects of all
factors that students must deal with (functional effects, health effects,
psychosocial, developmental, etc.) and how these factors impact the student’s
learning in all realms.

We have to separate the motor from the cognitive in our
approach to working with students with Orthopedic Impairments. Specialized
instructional strategies will alleviate motor errors and frustration for
students with severe physical disabilities.

It is also necessary for students with physical disabilities
to be involved and knowledgeable about their health care procedures in order
for them to be as independent as possible.

Students should also benefit from adapted curriculums and
assistive technology that will maximize their educational performance according
to their unique needs.

Standard 5: Learning Environments/Social Interactions

It is necessary for teachers to accommodate their student’s
needs within the classroom environment so that the student can more fully
access their instructional materials.

OI teachers should walk the emergency evacuation route to
make sure that students with physical disabilities are able to quickly and
safely leave the building. If the suggested route is not appropriate, then it
may be necessary to create alternative plans and procedures.

Positioning techniques are also necessary to ensure the most
functional use of the students’ limbs that are functional. Correct
re-positioning and movement in and out of the wheelchair are also extremely
important in order to prevent pressure sores that may become infected, thus
leading to other possible conditions, some of which can be fatal.

Mrs. Seals (DeKalb) asked about recommendations for physical
therapists regarding older students who are often dismissed from services
regarding decreased range of motion issues over time. Recommendation: “Are
there strategies that I can use as a teacher during the extra time that we have
during the day to assist with increasing range of motion that may be impacted
by contractures?”

Also, in order to prevent teacher injury, proper lifting and
handling techniques are important to know when lifting and handling students.

Spread:  Sometimes when people see a student with physical disabilities they assume there are other disabilities as well, i.e. a student with CP is intellectually disabled.

Making sure that paraprofessionals are not over stepping their boundaries which further enables learned helplessness.

Standard 6: Language

Making sure that students with disabilities are able to
communicate effectively through the use of an AT device or other assistive
technologies or strategies, always having a secondary form of communication
available when the primary system is inoperable.

Standard 7: Scheduling and Programming

OI students will often require an individualized approach
when determining what activities and classes may require accommodations and

OI teachers will often be called upon when a student is
being initially assessed for special education services.

Standard 8: Assessment

Assessment is a continuing and frustrating issue.

Standard 9: Professional and Ethical Practice

Attending consortium meetings are a wonderful example of
professional and ethical practice.

The physical and health and multiple disabilities division
is our CEC division for OI.

Standard 10: Collaboration

OI teachers must collaborate with an array of professionals
in order to most effectively serve the needs of our students with physical