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Power of Exile

The Power of Exile -
 Autism, A journey to recovery


Introduction: Sara’s Diet
and the IDEA


  1. Sara
  2. Sandra
  3. The Journey begins
  4. Sara joins our Family
  5. Journal Notes
  6. Impressions
  7. Influential People
  8. Center Stage
  9. I believe in Miracles
  10. Miracles in Abundance
  11. A Second Rainbow
  12. Widening Horizons
  1. World travel on a Wing and a Prayer
  2. Asperger Syndrome (Sam’s story)
  3. Autism: a Causal Theory and Treatment Option
  4. A Change in the Weather
  1. Second Timothy
  2. Turning Blue
  3. Food Intolerance in autism
  4. Sara’s Diet
    1. Introduction to the restricted diet
    2. Essential nutrients from foods
    3. Practical help with implementing a diet program
  5. What is Lutein?
  6. Autism, Pigments and the Immune System
  7. South Africa, World Community Autism Program
  8. Eating disorder in autism
  9. Autism, Origin – A Plausible Theory
  10. Autism, putting it all together

From: Introduction - Sara's Diet and the IDEA

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Introduction: Sara’s Diet and the IDEA
By Kenneth J. Haber

The Individuals with Disabilities Act (IDEA) provides for various services which can be of assistance for those who cannot afford the appropriate medical testing and evaluations. Additionally, under the circumstances of a residential program, it can be argued that the cost of the diet’s food and food supplements themselves ought to be covered by the Local Education Agency (LEA).
  One would expect a significant resistance to these interpretations from a school system initially. Therefore, those who can afford to bear their own costs might be advised to do so if they are most interested in implementing the diet, instead of fighting over the cost of the diet. Yet, for subsequent children, who follow after some child in the community responds well to the diet, and also for those children whose parents are not blessed financially to be able to bear these extra costs, the following information should prove helpful:

Supplemental Payment for Special Dietary Needs In a Residential Setting and Payment for Medical Diagnostic and Evaluation Services; 20 USC 1401 ( 17 ) and 34 CFR 300.302

As a precursor to the financial/legal aspects about to be discussed, it would be appropriate to review certain pertinent information, which factually justifies a request for payments. This and other similar information should be related to your LEA. As we know, certain autistic children have become symptom-free based upon dietary intervention. Other autistic children faithfully and correctly on the diet for over 6 months have all made significant behavioral improvements. Sandra Johnson Desorgher has developed a lutein-free dietary approach to dealing with autism. Sandra has a database of over 1200 children on the diet, approximately 10% are symptom free. Furthermore, this figure is unfair to the diet because effective tracking is not currently possible due to limited financial resources. Additionally, effective implementation and monitoring of the diet is also significantly restricted due to financial limitations. Sandra’s 14-year-old autistic adopted daughter (now 19), who Sandra already had on a gluten-free, casein restricted diet, became symptom-free in two weeks after including a carotenoid pigment-free aspect to her diet. Sara was 11-years-old when she became symptom-free and this status continues.
  What is preliminarily needed to most effectively undertake the dietary approach is certain diagnostic testing for food allergies and intolerances, digestive system deficiencies, and immune system deficiencies (or excesses). These diagnostic tests provide the basic information needed to construct an appropriate diet for these autistic children as well as to determine what, if any, medical treatment is appropriate. The capsulated theory is that deficiencies in the immune, digestive and metabolic systems as well as food allergy and food intolerance result in body chemistry imbalances which effect the neurotransmitters in the brain. Thus, one can readily recognize how useful and appropriate medical testing is.
  The IDEA starts at Title 20 USC § 1400. Title 20 USC § 1401 ( 17 ) specifically defines “related services” which are to be provided, at no costs to the parents, under the IDEA as “Including medical services, except that such medical services shall be for diagnostic and evaluation purposes only”. Inasmuch as the requested payment would be for diagnostic testing charges and are not related to charges for medical treatment, these charges should certainly be covered. Theoretically, the use of one’s insurance should not even be required because one’s policy normally has a payment limit and therefore, it would be considered a cost to a parent contrary to the concept of a Free Appropriate Public Education ( FAPE ). One might offer, in the spirit of cooperation, to utilize their limited insurance resource so long as the LEA is willing to reimburse for uncovered testing charges and such other charges as co-pays and the applicable deductibles.
  As far as reimbursement for extra food costs, if a child is in a residential program and if the private school charges parents for special diets, the LEA should consider several factors as to the issue of reimbursement. First, federal regulation at 34 CFR 300.302 requires that a residential program must provide that “non-medical care and room and board, must be at no cost to the parents of the child.” Therefore, the LEA is required by law to cover such costs as supplemental food charges and food supplements that are appropriate for the child’s dietary needs.
  Second, while there may be current increased food costs that are directly attributable to the child’s diet, the LEA and the community which serves would ultimately save substantial financial funds inasmuch as the child could very possibly ultimately be able to return to his/her home, if the child is in a residential placement, or otherwise require less or no services.
  Furthermore, the children, who have undertaken this dietary approach and who have not yet become symptom-free, after 6 months on the diet, have all manifested significant behavioral and other improvements. This makes them more available for training, eventually less in need of more restrictive environments, and less dependent as they become mature adults. This adds up to savings for the LEA as well as long term savings for the community as a whole in years to come.