RARE Toolkits

Below is a list of all of our current RARE Toolkits.

ADVOCATING FOR YOUR CHILD WITH A RARE DISEASE AT THEIR SCHOOL
Starting the Process
Starting the Process

Starting the Process

If you think that your child is not developing at the same pace or in the same way as most children his or her age, a good place to start is with your child’s pediatrician.

For children under three years of age, your pediatrician may refer you to the early intervention program in your area to evaluate your child for a developmental delay or disability. You may also contact early intervention directly. To find the program in your area, ask your pediatrician or visit the Early Childhood Technical Assistance Center website. Although the request doesn’t have to be in writing, it makes sense to document who you spoke with and what was said for your own tracking purposes.

For children over three years old, if you suspect your child has any disability or challenge that impacts learning, including physical, behavioral, or a special learning need, you may ask the school for a meeting to determine if he or she is eligible for services or accommodations. Educators, therapists (physical, occupational, speech), or doctors can also request eligibility meetings with the school. Referrals should be made in writing and explain why you believe your child may have an educational or behavioral disability. See the Supplemental Materials online for a sample letter.

After the referral, a team, including key staff and parents, meets to determine if the child is eligible for an Individualized Family Service Plan (IFSP), Individualized Education Plan (IEP) or a 504 Plan; the child’s needs and age will determine the direction. Sometimes children need further testing.

“Understanding IEP language can be confusing and it’s made up of many parts,” says Tanya Johnson, Special education teacher, parent of a child with Prader-Willi Syndrome and rare disease advocate. “It is driven from assessments, observations, and medical reports. But if there is one part you can become an expert in, it’s the action plan and the goals you want your child to achieve.”

Read more advice from Tanya Johnson through her RARE Daily series, “Leading IEP Champions, and see the Supplemental Materials online for some things to consider during an IEP meeting. These are similar for a 504 meeting.

The IEP Team Process: Getting Ready for the IEP Meeting
In this video, you learn abut getting ready for your child's IEP meeting. Being prepared for the IEP meeting is the best way to actively and effectively participate in planning your child's educational program.

If the child is found eligible, the team then develops the IEP or 504 Plan. The team will meet and review the assessment information available about the child, and design an educational program to address the child’s educational needs that result from his or her disability. The team will determine the child’s educational disability code:

01 Mental Retardation
02 Hearing Impairment
03 Deafness
04 Speech/Language Impairment
05 Visual Impairment
06 Emotional Disturbance
07 Orthopedic Impairment
08 Other Health Impairment
09 Specific Learning Disability
10 Multiple Disabilities
12 Deaf/Blindness
13 Traumatic Brain Injury
14 Autism
15 Developmental Delay

There is no requirement for parent participation in a 504 or IEP-planning group or for your written approval of the plan, like there is if your child qualifies for special education. However, many schools routinely involve parents in the 504 process as they would in special education.

Once the documentation is complete, the planning group determines the student’s placement. The student is always educated in the least restrictive environment. That means that he/she would be taught in the regular classroom, unless they are unable to satisfactorily achieve in that environment, even with the use of aids and services. In that case, other locations, including alternate settings in the school and private (even residential) programs may be used.