Tag Archives: Brittle Bone Disease

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.