Advocating for a Child with Special Needs
Submitted by Elise Fessler
Please note that this is a guide written by a PTA parent who has been through the process and there are many sources for information. "Special needs" challenges that impact a child can be as mild as attention issues or as extreme as full physical and cognitive involvement. Each case is individual but the laws and regulations that define a school district’s responsibilities are the same. This is also a very emotional topic. Usually the earlier the intervention and help for the child the larger the benefit. Stay focused and know that you are the best advocate your child has!
Intervention help for a child birth to age 3 must be obtained through the county MR/DD agency (check the internet or phone book for applicable county). Your school district is responsible from age 3-21. Most school districts have a Pupil Services or Special Needs Director which is who you need to contact for ages 3-5. Usually the principal is the place to start for school age children.
First Step: Identification of the Need for Intervention
Sometimes physicians or teachers will identify the need for special assistance but many times it is the parent(s) that see that their child is struggling in an area. It actually is "easier" to receive services when the child’s challenges are more extreme (i.e. severe hearing or vision impairment, down syndrome, cerebral palsy, severe autism or mental impairment). It is the child that appears "typical" but is struggling that can be harder to obtain services for. Again, don’t give up!
A Multifactored Evaluation (MFE) is performed by the school district to determine eligibility for services. A school can choose to create an "intervention plan" first to determine if sufficient progress is made, eliminating the need for an MFE. A teacher or parent can request the evaluation process. The MFE consists of background information provided by you, the parent. It also includes information from teachers about how your child is progressing in his/her program. Standardized tests may also be administered to assess levels of cognitive functioning, adaptive behavior skills, social/emotional behavioral functioning, communication skills and academic performance. A standard score that is two standard deviations below the mean in one area of functioning or standard deviations of 1.5 in two areas of functioning would qualify a child for preschool disability services. The school age disability categories have specific qualifications as well.
Note that especially for borderline situations this can be a big hurdle. Many times the child doesn’t qualify for services until he/she falls far enough behind which usually happens around fourth grade. Outside private evaluations can be pursued for identification purposes but those can be costly and take a great deal of time. Check with your pediatrician or children’s hospital for suggestions. There is also something called a "504 Plan" that could be implemented with the agreement of the school. Medical documentation of a "disabilility" or "condition" is needed to write a 504 plan. This indicates what is happening with the child that would allow the accommodations to be made to "level the playing field".
The 504 Plan can define accommodations for the child that do not involve services such as therapies. Some examples of accommodations could be extra time on tests, reading of tests by an adult, or smaller assignments. Be aware of the possible self-esteem issues that accompany a child that knows he/she is struggling more than their peers.
Your Child Qualifies, Now What?
With a qualifying MFE now comes the Individualized Education Program (IEP). Get used to acronyms, too. The IEP team is made up of the parent, teachers, and a school district representative (usually the building principal or director of pupil services). Related services personnel can also be members of the IEP team, depending on the child’s needs (e.g., speech/language pathologist (SLP), occupational therapist (OT), physical therapist (PT)).
An IEP is a written plan for a child with a disability that is developed and implemented according to federal and state regulations. This plan includes:
A discussion of future planning (vision statement)
Present levels of academic and functional performance
Identification of your child’s specialized educational needs
Identification of measurable goals and objectives with measurement of success
defined (e.g., the child will perform the task 4 out of 5 times in a week)
Identification of needed services, who will provide them and where will they be
provided (e.g., regular education classroom, special education classroom,
A few things to keep in mind about the IEP and the meeting itself:
o A parent can help set the goals, but the school is responsible for how they are met. We can ask for a set amount of time for therapy, but that is really up to the school.
o Try to keep the measurement as "measurable" as possible (i.e. successes per attempt rather than "improve from baseline"). It is easier to measure progress with hard data. If goals are not met the child may qualify for summer services (if available). Note that summer (extended school year) services are not provided just because goals are not met there also needs to be an issue with skill retention due to interruption in the school year (winter break, spring break, summer break). This would mean that the student doesn’t typically regain those skills within a reasonable amount of time (usually by the end of first quarter). Keep track of that as well.
o Bring somebody with you to the IEP. Even if all of the school personnel are "friendly" it is an overwhelming experience especially at first. It is especially helpful if a friend with IEP experience is available.
Usually an IEP must be reviewed annually. A review can be requested at any time by a team member including the parents. The most recent Individuals with Disabilities Education Act (IDEA) reauthorization does allow for up to a three year IEP WITH parental consent from federal legislation. Currently Ohio regulations do not allow for the three year IEP, but that may change.
If you are not happy with your child’s IEP, the school district must have an opportunity to fully address the issue before legal action can be taken (Due Process). This is not a usual event, but be aware that you have rights.
Also be aware of all of your placement options especially if your child has significant issues. The IDEA law is written stating that the child is to be in a "least restrictive environment". Most of the time this is interpreted as being in an "inclusionary setting" (with typical peers). That may not always be the best placement for your child. Other options such as self contained classrooms or MR/DD schools if either is available could better serve your child. Be sure that you are aware of all of the education possibilities.
Remember that you are the expert and best advocate for your child. There are a lot of resources available on the topic of special needs. Below is a list of a few. Try to keep a balance between keeping yourself informed and being driven by guilt that you are not doing enough. There are many aspects that parents deal with when they have a child with special needs. There is a strain on time, money and emotions. One of the best things you can do for yourself and your child is to find a support or resource group. Most of the knowledge that I have gained about this education process and just dealing with life in general came from other parents and not "experts". Start with a group that correlates with your child’s diagnosis (i.e. Down syndrome society, autism society, cerebral palsy group, etc.). Most of the resources that would be local to your community should be able to be found from the internet or the local children’s hospital.
o Societies or groups for your child’s specific diagnosis
o County MR/DD office
o County ARC (advocacy and family resource information)
o IDEA government website (http://www.ed.gov/policy/speced/guid/idea/idea2004.html )
o Government IEP guide website (http://www.ed.gov/parents/needs/speced/iepguide/index.html)
o Wright’s Law (e-mail Subscribe: www.wrightslaw.com/subscribe.htm; website http://www.wrightslaw.com/idea/index.htm)
o LD Online website (http://www.ldonline.org/)
o Local Children’s Hospital (usually have a resource library)