Marcia Hubbard lives in Missouri and has two grandchildren who require individualized educational programs. One grandchild, Jonathan Devantier, has MSUD. In the following article she shares what she has learned through her experience and extensive research in pursuing the best education for her grandchildren with special needs.

Special education departments are mandated to provide specific services for special education students. However, laws may be interpreted differently and cooperation of school district personnel may vary. Contact your State Department of Education for information on your State's requirements.

Just when we think we have learned to provide the best care possible for our children with MSUD, they enter the school setting. Whether the child is mildly or severely affected by MSUD, there is new terminology and legalities to learn in order to get a Free Appropriate Public Education (FAPE). Since public schools are governed by federal and state laws, the scenario can get complicated and downright daunting at times. This article deals with understanding what is involved in getting the best education for your child in elementary, secondary and post secondary public schools. (Check the law regarding private schools.)

Educated parents are the key for an optimum outcome. However, the schools that will be educating your child will not necessarily educate you for this process. Parents need to take the initiative to do research and educate themselves. I'm thankful for the many educational tools currently available and for the laws that prohibit discrimination. You will need to do your homework to determine which is the right classification for your child and to what degree you will use these regulations and services for their benefit.

Some of the following information comes from the document, "Procedural Safeguards for Children and Parents" that is mandated to be given to parents during the IEP process. I also used web sites providing information to the public recommended to me by the child advocacy group MPAC-Missouri Parents Act. (See list of web sites at the end of this article.) Your own local child advocacy groups can provide help when needed. I am not intending to give legal advice, but to help educate parents for this task.

Individual Education Program (IEP)

The Individual Education Program, or IEP, is a written, legal and binding document made between members of the school staff and the parents of a child. It is written during a meeting with all those who will be directly responsible to carry out the terms of the IEP. As the name implies, you have the right to request the services for your child based on the individual needs of the child.

The IEP outlines the steps, plans, procedures, etc. needed to address these needs. This can be as simple as stating a time to allow your child to drink their formula or as complex as dealing with issues related to learning disorders and physical, emotional and behavioral challenges. A parent has the right to review these terms or change them, and must notify the school in writing when a new IEP is desired. The best way to identify your child's needs is to imagine you are describing your child to a stranger who will be taking your child for a day trip. Then for each special need ask, "What will the district do about this?" and "How can we judge if these actions serve to meet my child's needs?"

Prior to the passage of the Individuals with Disabilities Education Act (IDEA) in 1975, the law legally allowed schools to offer only the programs or services they had available. The primary purpose of the IDEA was to change that and entitle students to services individually designed to meet their unique needs without regard to the availability of the needed services.

The IEP process must determine:

  • Which needs or characteristics require special education or individualization of services.
  • Exactly what special education-related services or modifications the district will provide.
  • How and when the results of those services will be evaluated.

The Participants

The law specifies that in addition to the parent and student (if the parent wishes the student to be present), a teacher of the student, and a district representative must be present. The IDEA regulations allow the district substantial discretion in determining which teacher will be at the IEP meeting. In addition, at least one team member must be qualified (by state standards) in the area of the student's disability. If this is not the teacher, it must be the district representative. The district representative must provide or be qualified to supervise special education, have the authority to allocate district resources, and be able to guarantee no administrative veto of the IEP team's decisions.

In addition to the parent, the teacher, the district representative and possibly the student, the first IEP meeting for a given student must be attended by a member of the evaluation team or someone familiar with the evaluation. In addition, either the district or the parent may invite anyone else. The district must inform the parent ahead of time of all persons invited by the district who will be at the IEP meeting. There is no similar requirement for parents to inform the district of anyone they may invite.

Finding the Proper Category

An IEP is written for those individuals that qualify for services under the Americans with Disabilities Act (ADA) or IDEA. Your child must be eligible in at least one category. Often the schools evaluation/screening process helps determine whether or not the student qualifies for such services.

The following chart gives a reasonable, brief description of each category. Some individuals will exhibit characteristics that will place them in one category without question; others may not be as well defined. I think it is safe to say that all children with MSUD will fall under Section 504 due to their special dietary needs, which is addressed by Federal Government laws governing school lunch programs.

See the chart on the next two pages for more information on Section 504. The descriptions in the chart are brief and should not be used as the sole source for determining the status of a child.

Americans With Disabilities Act of 1990 (ADA) Individuals with Disabilities Education Act (IDEA), amended in 1997 Section 504 of The Rehabilitation Act of 1973
A civil rights law to prohibit discrimination solely on the basis of disability in employ-ment, public services, and accommodations. An education act to provide federal financial assistance to state and local education agencies to guarantee special education and related services to eligible children with disabilities. A civil rights law to prohibit discrimination on the basis of disability in programs and activities, public and private, that receive federal financial assistance.
Who Is Eligible?
Any individual with a disability who (1) has a physical or mental impairment that substantially limits one or more life activities; or (2) has a record of such an impairment; or (3) is regarded as having such an impairment. Further, the person must be qualified for the program, service or job. Children and youth aged 3-21 who are determined through an individualized evaluation and by a multidisciplinary team (including the parent) to be eligible in one or more of 13 categories and who need special education and related services. The categories are autism, deaf-blindness, deafness, emotional disturbance, hearing impairment, mental retardation, multiple disabilities, orthopedic impairment, other health impairment, specific learning disability, speech or language impairment, traumatic brain injury, and visual impairment including blindness. Children aged 3 through 9 experiencing developmental delays may also be eligible. Infants and toddlers from birth through age 2 may be eligible for early intervention services, delivered in accordance with an individualized family service plan. Any person who (1) has a physical or mental impairment that substantially limits one or more major life activities, (2) has a record of such an impairment, or (3) is regarded as having such an impairment. Major life activities include caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working. The person must be qualified for the services or job; in the case of school services, the person must be of an age when nondisabled peers are typically served or be eligible under IDEA.
Responsibility To Provide a Free, Appropriate Public Education (FAPE)?
Not directly. However, ADA provides additional protection in combination with actions brought under Section 504 and IDEA. ADA protections apply to nonsectarian private schools, but not to organizations or entities controlled by religious organizations. Reasonable accommodations are required for eligible students with a disability to perform essential functions of the job. This applies to any part of the special education program that may be community-based and involve job training/ placement. Although not required, an IEP under IDEA will fulfill requirements of Title II of the ADA for an appropriate education for a student with disabilities. Yes. A FAPE is defined to mean special education and related services that are provided at no charge to parents, meet other state educational standards, and are consistent with an individualized educational program (IEP). Special education means "specially designed instruction, at no cost to the parents, to meet the unique needs of the child with a disability." Related services are those required to assist a child to benefit from special education, including speech-language pathology, physical and occupational therapy, and others. A team of professionals and parents develop and review at least annually, an IEP for each child with a disability. IDEA requires certain content in the IEP. Yes. An "appropriate" education means an education comparable to that provided to students without disabilities. This may be regular or special education. Students can receive related services under Section 504 even if they are not provided any special education. These are to be provided at no additional cost to the child and his or her parents. Section 504 requires provision of educational and related aids and services that are designed to meet the individual educational needs of the child. The individualized educational program of IDEA may be used to meet the Section 504 requirement.
Funding To Implement Requirements?
No, but limited tax credits may be available for removing architectural or transportation barriers. Also, many federal agencies provide grants to public and private institutions to support training and technical assistance. Yes. IDEA provides federal funds under Parts B and C to assist state and local educational agencies in meeting IDEA requirements to serve infants, toddlers, children, and youth with disabilities. No. State and local jurisdictions have responsibility. IDEA funds may not be used to serve children found eligible only under Section 504.
Procedural Safeguards/Due Process
The ADA does not specify procedural safeguards related to special education; it does detail the administrative requirements, complaint procedures, and con-sequences for noncompliance related to both services and employment. The ADA also does not delineate specific due process procedures. People with disabilities have the same remedies that are available under Title VII of the Civil Rights Act of 1964, as amended by the Civil Rights Act of 1991. Thus, individuals who are discriminated against may file a complaint with the relevant federal agency or sue in federal court. Enforcement agencies encourage informal mediation and voluntary compliance. IDEA provides for procedural safeguards and due process rights to parents in the identification, evaluation and educational placement of their child. Prior written notice of procedural safeguards and of proposals or refusals to initiate or change identification, evaluation, or placement must be provided to parents. IDEA delineates the required components of these notices. Disputes may be resolved through mediation, impartial due process hearings, appeal of hearing decisions, and/or civil action. Section 504 requires notice to parents regarding identification, evaluation, placement, and before a "significant change" in placement. Written notice is recommended. Following IDEA procedural safeguards is one way to meet Section 504 mandates. Local education agencies are required to provide impartial hearings for parents who disagree with the identification, evaluation, or placement of a student. Parents must have an opportunity to participate in the hearing process and to be represented by counsel. Beyond this, due process is left to the discretion of local districts. It is recommended that they develop policy guidance and procedures.
Evaluation/Placement Procedures
The ADA does not specify evaluation and placement procedures; it does specify provision of reasonable accommodations for eligible students across educational activities and settings. Reasonable accommodations may include, but are not limited to, redesigning equipment, assigning aides, providing written communication in alternative formats, modifying tests, reassigning services to accessible locations, altering existing facilities, and building new facilities. With parental consent, an individualized evaluation must be conducted using a variety of technically sound, unbiased assessment tools. Based on the results, a team of professionals (including the parent of the child) determines eligibility for special education. Reevaluations are conducted at least every 3 years. Results are used to develop an IEP that specifies the special education, related services, and supplemental aids and services to be provided to address the child's goals. Placement in the least restrictive environment (LRE) is selected from a continuum of alternative placements, based on the child's IEP, and reviewed at least annually. IEPs must be reviewed at least annually to see whether annual goals are being met. IDEA contains specific provisions about IEP team composition, parent participation, IEP content, and consideration of special factors. Section 504 provides for a placement evaluation that must involve multiple assessment tools tailored to assess specific areas of educational need. Placement decisions must be made by a team of persons familiar with the student who understand the evaluation information and placement options. Students with disabilities may be placed in a separate class or facility only if they cannot be educated satisfactorily in the regular education setting with the use of supplementary aids and services. Significant changes to placement must be preceded by an evaluation.Section 504 provides for periodic reevaluation. Parental consent is not required for evaluation or placement.

From ERIC Digests. This ERIC digest was prepared with funding from the Office of Educational Research and Improvement (OERI), U.S. Department of Education, under Contract No. ED-99-CO-0026. The opinions expressed in the publication do no necessarily reflect the positions or policies of OERI or the Department of Education.

List of Resources For Preparing an IEP

The web addresses and toll free numbers listed below can be used to obtain further information if needed, including full copies of the laws given in the chart on the previous pages.

Wrights Law: Copies of the law and instructions how to apply it:

National Information Center for Children and Youth with Disabilities: Excellent for obtaining lists of state resources.

P.O. Box 1492
Washington, DC 20013
v/tty: 800-695-0285 fax: 202-884-8441

Office of Special Education Programs: Numerous items that can be received by mail.

Office of Special Education Programs
Office of Special Education and Rehabilitative Services
U.S. Department of Education
400 Maryland Ave. SW
Washington, DC 20202
Phone: 202-205-5507

The Americans with Disabilities Act (ADA)
1-800-514-0301 or 1-800-541-0383 (TDD)

Section 504 of the Rehabilitation Act

Individuals with Disabilities Education Act

U.S. Office of Civil Rights



Marcia Hubbard also contributed a poem written by her father, Red James, to his great grandson, Johnathan Devantier, who was born on April 15, 1998. The poem was written during Johnathan's initial metabolic crisis when he was in the Intensive Care Unit. Red had little formal education, but has done well in his business as a farm equipment dealer. He is well known locally for his poetic talent. As Marcia wrote, "Being diagnosed with MSUD, touches generations of the family." The poem was named after Johnathan's namesake fruit, Jonathan apples.

Little Apple

Oh little Boy I have not yet saw,

I think of you, your Great-Grandpa.

A week old now, and so very bad,

You being so sick, makes me sad.

Get well I pray ever so much,

So sometime soon I can feel your touch.

You are so small; be strong young lad,

I wish you to come home with your mom and dad.

My life has been blessed with all my kin,

I'm sure to us, God must had to send,

so that we could pass out all of our love

just as he does from Heaven above.

Little Apple, I call your name

my prayers and best wishes are the same.

Fight hard; we will help in any way

so I will get to see and hold you some day.

- Your Great Grandpa (Red James)


The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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