Tools For Viewing
10 The Most Commonly Asked Questions
Clinical Trials & Research
Huntington's Disease~WeMove Info
Advocacy/Donations/Press Info
Clinical Definition & Search
Facing HD~Family Handbook
JHD Handbook-Chapter 1
JHD Info-Stanford Univ.
Physician's Guide To HD
Caring for People with HD
Physical & Occupational Therapy In HD
Understanding Behaviour in HD-Dr. Jane Paulsen
Understanding Behavioral-Dr. Edmond Chiu
Advanced Stages Caregivers Handbook
First Shift-Certified Nursing Assistants
Activities of Daily Living-HD
Unified HD Rating Scale (UHDRS) Motor Section
Westphal Variant
Age & Probability Chart
At Risk For HD-What Next?
At-Risk Checklist
Best Interest of Child?
Crystal Ball?
Food For Thought
Parent Hasn't Tested?
Q&A On Risk of Inheriting JHD
Testing Children
Genetic Disorders & Birth Defects
Genetic Testing for HD
Genetic Counseling-In General
Psychological Impact
Intro: Genetics/Genetic Testing
Prenatal & Preimplanation
Prenatal Testing-In General
o Genetic Testing Resources
o Personal Stories
Coping With The Early Years
Age of HD Appearance
Age of Onset-Historical
Family-HD Underestimated
Children of Parents With HD
Child~Parent Ill
Clinical Description JHD
HD - What Kids Are Saying
HD & Me
JHD-Duration of Illness
JHD-Clinical and Research
JHD Symptoms
Parenting With HD
Patients/Families Coping
Talking With Children About HD
5 Stages of HD
JHD Resources
Parent Resources
8 Fears of A Chronic Illness
Anxiety, Fears & Phobias
Apathy-Physician's Guide
Attention-Perceptual/Unawareness Physician's Guide
Bed/Pressure Sores
Bed/Pressure Ulcer Guideline
Behavior Management
Bi-Polar Disorders
Botulinum toxin therapy
Caring Tips
Child Abuse-Reconizing Signs
Chorea-Physician's Guide
Cognitive/Decision Making/Impulsivity
Cognitive-Short Tips
Contractures~Joints Locking
Dehydration-Physician's Guide
Denial of HD
Depression~Physician's Guide
Depression-Understanding It
Depression-How To Help
Depression - Treatment Resistant Patient
Depression-Other Resources
-Read If Your Child Is On Antidepressant
Disgust - Impaired Recognition in HD
Dissociative disorders
Driving - Physician's Guide
Dyslexia Resources
Dystonia/Rigidity & Spasticity Physician's Guide
Dystonia-Predominant Adult-Onset HD
Epileptic Seizures and Epilepsy
-Seizures ~Special Populations
Falling - Subdural Hematoma Risk
Fevers - Unexplained
Fevers, sweating & menstural cycles in HD
GERD (Stomach)
HD Principle Treatments
Hand muscle reflexes in HD
Hypothalamus - A Personal Theory
Insomia ~Physician's Guide
Irritability~Temper Outburst Physician's Guide
Learning Disability
Mania/OCD~Physician's Guide
Mood Disorder Rate In HD
Myoclonus (Movements)
Nails-What To Look For
Night Terrors
Obsessive Compulsive OCD
Panic Disorder
Personality disorders
Pneumonia-Advanced Stages
Pneumonia - Aspirated (Inhaled)
Prosody - Social Impairment
Sexuality~Physician's Guide
Skins Sensitivity
Sleep Disorders
Smoking-Physician's Guide
Why Certain Symptoms Occur
Symptom & Treatment Resources
Communication Resources
Communication Problems
Communication Strategies For HD~Jeff Searle
Hints For Weight Loss in HD
HD & Diet~HSA Fact Sheet 7
Nutrients: Some Possible Deficiency Symptoms
Nutrition and HD~Anna Gaba (Recipes)
Nutrition Information In HD~Naomi Lundeen
Speech & Swallowing~Lynn Rhodes
Swallowing & Nutrition Physician's Guide To HD
Swallowing & Nuitrition Resources
Swallowing Warning Signs
5 Swallowing Problems
Taste changes in HD
Weight Gain
-Feeding Tubes~Advanced Stages of HD
-Feeding Tube~Jean Miller
-Feeding Tubes: One More Word ~Jean Miller
-Feeding Tubes & Baby Foods
-Feeding Tube~Dental Care
-Feeding Tube Instructions~Jean Miller
-Feeding Tube Resources
Finding a Therapist - Behavoir
What Is A Physiotherapist?
Physical Therapy In HD
Speech-Language Therapy
Therapy Descriptions
Therapy Resources- Easter Seal
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Medications-Movement Disorders
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Cutting Prescriptions
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-Adolescents Under 25
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Sertraline ~Zoloft
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o Surgery Resources
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CT Scans, MRI's etc.
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Tests Commonly Used
o Procedures Resources
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o Suicide Resources
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o Emotional Support Resources
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Prescription Drug Cards Part I
Prescription Drug Cards Part II
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Coping At The End
Kelly E. Miller
Song & Verse
Letter From My Heart
Disability-Special Education Plan


Today more than ever, our education system is striving to ensure that all children receive an education that is appropriate for their abilities. Children with delayed skills or skills well beyond their age level are eligible for special services that can provide individualized instruction and programs in public schools, free of charge to your family. If you understand how to access these services, you will be a better advocate for what your child needs.

Following the passage of the Individuals with Disabilities Education Act (IDEA 97), parents of children with special needs have become even more important members of their child's education team, working with educators to develop a plan that will help their child succeed in school. This individualized education plan (IEP) describes the goals the team has set for the child for the school year, as well as any special supports that are needed to help achieve those goals.

Who Needs an IEP?
A child who has difficulty learning and functioning in a regular classroom with his peers is the perfect candidate for an IEP. Children who are struggling in school may qualify for support services for a variety of reasons. Some have learning disabilities that make it difficult to read or process information. Others have disabilities - such as attention deficit/hyperactivity disorder, emotional disorders, mental retardation, autism, hearing impairment, visual impairment, a speech or language impairment, or developmental delay - that require that they be taught in a special way. Still other children have advanced skills, either overall or in one specific area of learning such as math or reading, and need an enriched education curriculum so they do not become bored.

In most cases, the services and goals outlined in an IEP can be provided in a standard school environment. This can be done in the regular classroom (for example, a reading teacher helping a small group of children who need extra assistance while the other kids in the class work on reading with the regular teacher) or in a special resource room in the regular school. The resource room can serve a group of children with similar needs who are brought together for help.

However, children who need intense intervention may be taught in a special school environment. This can mean they spend most of their day in a special classroom and join the regular classes for non-academic activities (like music and gym) or one or two academic activities in which they don't need extra help. These classes have fewer students per teacher, allowing for more individualized attention. In addition, the teacher usually has specific training in helping children with special educational needs. Because it is the goal of IDEA 97 to make sure that each child is educated in the least restrictive environment possible, usually every effort is made to help children stay in a regular classroom. But when the child's needs are best met in a special class, then she may be placed in one.

Eligibility - The Referral and Evaluation Process
The referral process generally begins when a teacher or parent notices a child is having trouble in the classroom, and the teacher notifies the school counselor or psychologist. The first step is to determine whether the child even qualifies for special services. It is important to note that the presence of a disability does not automatically guarantee he will receive those services. In order for him to be eligible, the disability must affect the child's functioning at school.

To determine a child's eligibility, a multidisciplinary team of professionals will evaluate him based on their observations and his performance on standardized tests. As a parent, you can decide whether to have your child assessed. If you choose to do so, you will be asked to sign a permission form, which will describe the kinds of people involved in the process and the types of tests they use. These tests may include measures of specific school skills, such as reading or math, as well as basic developmental skills, such as language. The professionals on the evaluation team may include a psychologist, a physical therapist, an occupational therapist, a speech therapist, a special educator, a vision or hearing specialist, and others, depending on the specific needs of the child.

Once the team members complete their individual assessments, they develop a comprehensive evaluation report (CER) that compiles their findings and outlines the skills and support the child will need. The parents then have a chance to review the report before the IEP is developed.

Development of an IEP
The next step is an IEP meeting, where the team and parents decide what will go into the plan. In addition to the evaluation team, a regular teacher should be present to offer suggestions about how the plan can help the child's progress in the standard education curriculum.

At the meeting, the team will discuss your child's educational needs - as described in the CER - and come up with specific, measurable short-term and annual goals for each of those needs. If you attend this meeting, you can take an active role in helping develop the goals and determining which skills or areas will receive the most attention.

The cover page of the IEP outlines the support services your child will receive and how often they will be provided (for example, occupational therapy two times per week). Support services may include special education, speech therapy, occupational or physical therapy, counseling, audiology, medical services, nursing, vision or hearing therapy, and many others.

If the team recommends several services, the amount of time they take in the child's school schedule can seem overwhelming. To ease that load some services may be provided on a consultative basis. In these cases, the professional consults with the teacher to come up with strategies to help the child but does not offer any hands-on instruction. For instance, an occupational therapist may suggest accommodations for a child with fine motor problems that affect her handwriting, and the classroom teacher would incorporate these suggestions into the handwriting lessons she teaches the entire class. Other services can be delivered right in the classroom using an "integrated model" so the child's day is not interrupted by therapy. For the same child who has difficulty with her handwriting, an occupational therapist might work one-on-one with her while everyone else practices their handwriting skills. When deciding how and where services are offered, the child's comfort and dignity should be a top priority.

The IEP will be reviewed annually to update the goals and make sure the levels of service meet your child's needs. But it IEPs can be changed at any time on an as-needed basis. If you feel your child needs more, fewer, or different services, you can request a meeting and bring the team together to discuss your concerns. 

What Are Your Legal Rights?
Specific timelines ensure that the development of an IEP moves from referral to providing services as quickly as possible. Be sure to ask about this time frame and pick up a copy of your parent's rights when your child is referred. These guidelines (sometimes called procedural safeguards) outline your rights as a parent to control what happens to your child during every step of the process.

They also describe how you can proceed if you disagree with any part of the CER or the IEP - mediation and hearings are both options. You can obtain information about low-cost or free legal representation from the school district, or, if your child is in Early Intervention (for kids ages 3 to 5), through that program. Attorneys and paid advocates familiar with the IEP process will provide representation should you need it. You may also invite anyone who knows or works with your child to be a part of the IEP team if you feel her input would be helpful.

A Final Word
The IEP process is complex, but it is also an effective way to develop a plan that addresses how your child learns and functions. If you have concerns, do not hesitate to ask questions about the evaluation findings or the goals recommended by the team. Parents know their child best and should play a central role in creating a learning plan tailored to their child's specific needs.

Reviewed by: Steven Bachrach, EdD
Date reviewed: January 2001

Source:  KidsHealth www.KidsHealth.com is a project of The Nemours Foundation which is dedicated to improving the health and spirit of children. Today, as part of its continuing mission, the Foundation supports the operation of a number of renowned children's health facilities throughout the nation, including the Alfred I. duPont Hospital for Children in Wilmington, Delaware, and the Nemours Children's Clinics throughout Florida. Visit The Nemours Foundation to find out more about them and its health facilities for children http://www.nemours.org/no/