To God be the glory for special parents and the disabled child is a fruit of God’s majesty and wonderful works. Never mind labels, stereotypes, barriers, etc., we still exalt (highest elevation of honor, praise) God the King and when we teach our children God’s word and model our lifestyles in alignment with God’s word and will for us, we commend God’s works to another generation. This is how we advance the Kingdom. One generation to the next. Amen? Amen!
Be encouraged that the severely disabled child has the same rights as any other disabled individual with Special Needs education. If the child has extreme disabilities requiring medical technology such as a wheelchair, oxygen machine, leg braces, trache, medications throughout the day, etc., he or she is still entitled to attend a public school and receive special education (IEP).
Inclusion: Remember inclusion is the right to attend any “regular” class, etc. with “regular” students. While there are special schools for the blind, deaf, severely disabled students, it is still the parent’s right to send a child to any public school. This includes if the child needs to have a one-on-one nurse assist him or her with his or her medical or disability needs during the school day. In this case, there are nursing agencies who provide the one-on-one care, not the school nurse who is responsible for the entire student body.
- Remember your Service Coordinator can assist in locating a nursing agency to provide that one-on-one assistance, networking with other parents for nursing agency contact, or your independent search are acceptable. The school may also be able to recommend a nursing agency.
- The Director of Nursing at the nursing agency (and the nurse who will accompany the child if possible) should attend every IEP in person!
- Be certain the nursing agency you select accepts Medical Assistance or Medicare depending on which your child receives for regular healthcare needs. Some private nursing agencies will not accept these payment forms because they prefer private insurance to bill more, less paperwork. Private insurance may limit or restrict the number of days a year a "private-duty" nurse can provide services. Be wise, patient, thorough in selecting the nursing agency to attend school with your child.
- Under the Affordable Healthcare Act, pre-existing conditions including disabilities will gradually become impossible for insurance companies to deny services using this “excuse.” That means that eventually, nursing agencies will not be able to make exclusions as well.
- Effective June 2010, states are under mandate to create insurance for persons with “pre-existing conditions” commonly regarded as a "pool." As this new law is being implemented, it may be become over-whelming, but be patient. Finding the right nursing agency is absolutely possible!
- Having a nurse attend school with your child does NOT mean you do not have the parent responsibilities and duties. You still are the parent and should stay in that role. For example, the nurse attending school with your child should NOT be signing permission slips, etc. on your behalf. Period. The nurse is NOT your substitute for attending an IEP and is NOT your peer parent advocate. Keep the relationship professional! YOU have the last say at the IEP except when it is medically impossible to assist your child. Be reasonable to keep your child safe and healthy first and foremost.
- The nursing agency should have input in the IEP. The nursing agency should be able to comply with EVERYTHING in the IEP for your child. For example, if your child attends gym, so does the nurse. NO exceptions.
- Many times you may need a doctor’s order for the nurse to assist your child at school or with certain activities, functions. If the doctor orders it, it must happen and there are thousands of nurses willing to take the job. Smile.
- Be certain if your child needs to have a Licensed Practical Nurse (LPN), a Registered Nurse (RN) or a Certified Nursing Assistant (CAN). In most cases, only an RN or LPN can accompany your child to school. It must be clearly spelled out in the doctor’s order each year!
- It is YOUR responsibility to check the license and/or photo ID of each nurse who will take care of your child including the school nurse. You want to make sure it is current and you can contact your state board of nursing to determine if the ID/License is valid on the website.
- The school nurse is responsible to check the ID/License of each nurse entering the school to assist your child as well. Do your own check when the nurse first arrives at your home to assist your child and periodically while that nurse is employed.
- A nurse who forgets his or her ID/License does NOT work that day. Smile.
- Always consult with your child’s primary doctor and NOT rely totally on the medical professionals employed by the school system.
- If a conflict arises between the school medical professionals and the primary doctor, keep the child’s best health and safety interest first. It is alright to post-pone a certain activity so if it is a conflict that overwhelms you, post-pone making a decision until you find peace one way or the other with your decision.
- If there is a clear medical concern about your child’s development and education and you refuse, you could be subject to child neglect issues. Be smart and do your own independent research beginning with the Parent Resource Center and Disability Law Center.
o It is not uncommon for a school to sort of hint about a child neglect issue when none exists. Don’t be intimidated and you will learn the difference between a stubborn parent and a valid issue. Be humble and sacrifice pride.
Remember the Service Coordinator can locate resources for necessary adaptations, medical equipment, nursing, etc. so if it is recommended, get it. A nurse cannot sufficiently assist your child without the necessary adaptations, etc.
A CHILD WITH DISABILITIES IS NOT A SICK CHILD. A CHILD WITH DISABILITIES CAN GET SICK LIKE ANY OTHER CHILD. IF YOUR CHILD IS SICK, DO NOT SEND HIM OR HER TO SCHOOL even if he or she has a one-on-one nurse.
SICK is a cold, flu, fever, chicken pox, mumps, measles, recovering from surgery, ear ache or drainage, etc.
You can spell out what defines the word “sick” for your special needs child in the IEP. This should include under what circumstances to send your child home “sick” and when you decide to keep that child home due to sickness. Be patient as the school nurse, teachers, etc. gets to know and understand your child. Beware ~ children with special needs fake sickness too. (His greatness no one can fathom) Smile.
- Bus transportation to and from school for the special needs child includes if he or she has a nurse. The nurse needs to be with your child ALL the time! Typically, if a child needs a one-on-one nurse, the child will be taken to the school nurse when the one-on-one nurse goes to lunch, bathroom, etc. Enforce this policy always.
Be encouraged that in time, all things will be "normal." Be patient and have peace of mind.
(continued)
Posted By: agnes levine
Monday, September 19th 2011 at 1:16PM
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