We want to share with you your child's rights under Section 503 of the Rehabilitation Act and under Individuals with Disabilities Education Act (IDEA), but first I want to share my first hand experience as a member of a county School Mediation Board. Let me be very honest with you about county schools. They have staff that is, by in large, dedicated to the education of children. They are good people who have a major problem and that is money and staff. I can tell you I received memos from Superintendents saying "No more funds. Find no one eligible for special education in any form." He was not a bad man, just telling the truth.
When I worked for his district, I was troubled by many children, but one child who tugged at my professional heart strings was a 14-year-old in kidney failure who was bullied in gym class where he was forced to change and shower with a urine sac attached to his body. This was a skinny gray child whose grades were failing because he no longer wanted to go to school. He needed special attention, but none was forthcoming. At Mediation, his father came with no idea of his rights and this child became a statistic. It broke my heart. The school did not like "different". It was not equipped to deal with "different". Other children were not helped to understand "different". His gym teacher was brought into my office and asked if he could help this child. The answer was that he didn't have time, interest, or training. The counselors were too busy with paper work and his father did not know his rights. He went back into the hospital and his doctors gave proper instructions for the school and even sent a social worker to the school to meet with counselors and teachers, but nothing changed because his father did not know his rights. He died with no friends at school, being alienated and bullied till his last days at school. He had no rights. When I sat on the other side in Mediation meetings, I frequently got the services my patients needed, but it took work. I made sure all parts of the work-up needed for services were present, and a lawyer with a specialty in the area came with the family. I also made sure that we went at the beginning of the year when funds were available. We were ready
to help the school and came with suggestions that we could help set up. We were a collaborator not an enemy, but we knew our rights. We did not threaten. School boards have lawyers whose aim is to keep cases going until the child graduates, drops out, or is placed in a private school at the parents' expense. We all knew this when I worked for a school board. This is my experience. It is all based on the bottom line. The bottom line is money and qualified staff. If one child is placed in private facility, perhaps half or more of the money set aside for these cases may have been spent and, unless the people of the country vote for more funds, that's it.
Second, let me share that when I was in private practice, I saw my fair share of children and families with diabetes. The children who did the best were members of families who did not deny what was happening, whether it was an eating disorder, depression, or acting out. When I became a type 1 diabetic, myself, I too used denial to cope with this disease. What it got me was open heart surgery in my 40's, even though I had spent years treating children with diseases and their families' denial, and there it was in my life. I share this so that you as parents will help your children and not look the other way when something comes up.
Living with diabetes is not easy and for a child or adolescent it can become the seeds of a problem or add on to one. Now lets look at rights:
We all know that children with disabilities-and diabetes is a disability, or as the school looks at it, children with "special' needs-have the right to free and appropriate education. In addition, children in many private schools and day care centers are protected against discrimination because they are diabetics. They are protected by Section 504 of the Rehabilitation Act of 1973, which protects your child against discrimination in any program or activity receiving federal funds. This includes all public schools and day care centers and those private schools that get federal funds. To qualify for protection under 504 your child must have a physical or mental impairment that substantially limits one or more major life activities (such as learning), have a record of such impairment, or be regarded as having such impairment. This child has the right to a 504 plan with his/her school and if the school does not comply with this law, it can loose federal funding.
The Americans with Disabilities Act prohibits all schools and day care centers, except those run by religious organizations, from discriminating against children with disabilities. Individuals with Disabilities Education Act (IDEA). Under this law the federal government provides financial assistance to state and local education agencies in order that they can provide a "free, appropriate public education" to qualified children with diabetes. To get these services you must prove that your child's diabetes adversely affects his/her educational performance. As a type 1 diabetic, I can attest to the fact that trying to do anything with low blood sugar is impossible, and sleeping is all you want to do when your blood sugar is high. No matter how smart your child is, this is the truth and needs to be addressed at school. Once that is proved, you and teachers will set up an Individualized Educational Plan (IEP).You may also be able to rely on state laws to protect your child so make sure you are aware of these.
Now just what should be included in a Section 504 plan? Here we will outline the types of things that you will want to include. Do understand that if the school presents you with an IEP that you do not agree with, you are not bound to sign it. You can re-educate the school about your child's needs with information from his health care team, suggest additions and subtractions, and if all else fails you can litigate to get what your child needs.
501 plans may include:
A background explanation of diabetes with a specific listing of short and long term complications that will need to be addressed at school. Also a description of how your child controls his diabetes, ,i.e., injections, a pump, carbo counting, exchange counting etc., as well as a list of interventions should be included.
Next objectives will be stated plainly. Here it is important to tell the school the range of blood glucose levels necessary for optimal learning. A copy of your child's health care plan will be attached to this 504 plan to be implemented at school. Definitions of who will care for your child must be included. Authorized Diabetes Care Providers (ADCP) are staff members who have received training from a certified diabetes educator, a pediatric endocrinologist or a diabetes specialist. This person must be able to administer glucagons and insulin shots, understand physician instructions, know the symptoms of hypo and hyperglycemia, know the treatments, be able to recommend schedules and menus for meals and snacks, know how to perform finger sticks, apply state rules for security of medications and supplies, and how to treat blood glucose levels outside of the target range. A list of who these people are must be included, i.e. administrators, counselors etc.
Diabetes Care Assistant Providers, Bus Driver Diabetes Care Provider definitions and stipulations must be outlined. Academic-related accommodation section will outline trained personnel as well as the student's level of self-care. This area will outline the child's ability to inject himself, count carbs, test blood glucose levels, and monitor his own snacks, test for ketones and ability to take universal precautions. The IEP will outline who is responsible for daily snacks. It will state the child's right to water, bathroom access, and privacy. It will outline treatment of high and low blood glucose levels and which staff member will be contacted to help the child as well as how to contact parents, physician and emergency phone numbers. The IEP will outline glucose testing, where and how in the school Setting, and which trained staff can help. An ADCP will be available to perform this test if the child is unable or unwilling to do so. The insulin injections will be given according to the health care plan provided by the physician. Field Trip and Extracurricular Activity section will state that the child is able to participate in all field trips and extracurricular events including sports, clubs, and enrichment programs. An ADCP will accompany the student on field trips and activities away from school. Either a DCAP or ADCP will be available at all extracurricular activities. The student's diabetic supplies will travel with him to all of these activities.
Students will be allowed extra time to finish work if he had been affected by a low or high blood glucose level. He will be given instruction to help make up for lost classroom time and will never be penalized for these absences. Children have the right to test for high and low blood glucose levels at a specific time without penalty. An ADCP or DCAP will notify parents of changes in activities a specific number of days before the change. Parents are responsible for extra snacks when the schedule changes. The ADCP must provide information to any substitute teacher with written instructions regarding your child's care plan. Your child's teacher will encourage him to care for himself properly and he will be given privacy for blood glucose monitoring. Parents will be notified immediately for a list of diabetic events that are agreed to. Parents will provide a list of emergency phone numbers so that the school can reach someone in the family who knows what to do. Parents will provide the name and emergency phone number of the child's physicians. Both you and the school will need to sign this plan and it must be updated on a regular basis. Know your child's rights.
BSP
