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Advocating Effectively for your

Cleft-Affected Child

 

            It goes without saying that the best advocate your child will ever have is you, her parent.  The reason is obvious – because you CARE the most.  Therefore, your wheel can squeak the loudest; your roar will pack the most punch.  Twenty years from now, of all the people who are involved in your child’s care today, only YOU will be left to care about your specific child’s quality of life.  To take it one step further, you will most likely advocate better for your child than your child will advocate for herself.  Want proof?  How often do YOU go to the doctor when you feel sick, and how often do you take your child? 

            To advocate effectively, two things must be borne in mind:  First that you are not “up against” anyone. You are functioning within a team with a common goal.  There is no need to “duke it out” with the “powers that be” – be they medical, insurance, public service or educational.  They all exist to serve the needs of your child.  Second, you need to know your child’s rights, and what resources are available.

            Believe it or not, not every insurance representative knows what is the mandated right of every cleft-affected child.  Not every teacher or education professional is aware of your child’s needs and rights.   It behooves you greatly, then, to know those rights yourself so that you can advocate in such a way as to make certain that your child has access to those rights.

How to be a successful Advocate

Successfully advocating for your child does NOT mean getting everything YOUR way.  It means getting your child’s needs met.  An important first step is to define your child’s needs.  For instance, your child may need to receive effective speech therapy.  Your child may NOT need to receive speech therapy from a specific therapist, no matter how much you or your child like that therapist.  To meet your child’s needs, you want to secure speech therapy for your child that is matched to her specific speech needs. 

The best way to meet the needs of your child is to work WITH, and not against the team of persons whose job is to provide service to your child.  Too often, a parent chooses to take an adversarial approach.  This is the fastest way to ensure that your child will not get the best of care.  It is simply human nature that we work our hardest and give our best effort when what we are doing is pleasant.  While there are exceptions to the rule, most persons involved with our children are NOT trying to deny our children what is rightfully due to them. 

To advocate most successfully, we must take responsibility for what WE are best at, and allow others to share their own areas of expertise.  I know my child better than anyone else in the world.  This is a fact.  However, I do not know medicine better than the doctors.  I do not know speech issues better than the speech pathologist.  I do not know surgery better than the surgeons.  I do know my child.  I can educate myself concerning these other issues and then, with other professionals as a part of the larger team, we can pool our areas of expertise and agree upon a plan that will help my child the best.  It may be that I have to remind others of what is the mandated right of my child, and I can definitely share my concerns as my child’s mother.  That is my input.  I can also ask for clarification and suggest other strategies.  But I am doing my child a disservice if I choose to dictate to the doctor, for instance, how to practice medicine.  We are a team.  Each team member plays a specific position.  One player cannot pitch, catch and guard the bases on the same field in the same inning of the same game.  It just can’t be done if you want to win a game. 

To be an effective advocate, we must not be adversarial.  Realize that everyone has the same goal.  If you feel that some members of the team have lost their focus on the goal, it is well within your rights as the parent to refocus the team.  But this refocusing can best be accomplished in an assertive, rather than an aggressive manner. 

To be the best advocate, you must be educated in what constitutes your child’s rights, as well as the means by which you can reach your goal.  This means you have to familiarize yourself with both State and Federal mandates concerning insurance, education, and discriminatory practice.  Every State has its own State mandates in terms of education and insurance, but there are federal mandates that States must consider as well.  Arm yourself with facts.  Be ready to say, “According to the federal law for disabled students, IDEA, you are mandated to provide my child with ……” 

Be knowledgeable about your rights.  But also be knowledgeable about what is available for your child in terms of what your child needs.  You cannot, for instance, simply tell a doctor, “Don’t do a tongue flap, I insist instead that you do a z-plasty.”  if you don’t really understand the difference between the two, or when one technique is preferred over the other and why the doctor has chosen the technique that is planned.  Be aware that what seems to make perfect sense to you might in fact be far more complicated.  But realize that you  have a RIGHT to information that you understand (informed consent) before proceeding.  You are the one that consents to surgery, and you need not sign a consent until you understand a procedure.  Most doctors have no problem taking the time to make sure you understand.  After all, we are all on the same team.  If the doctor’s reason is something like, “We always do that procedure.” Then you have reason to be very concerned. 

Know your rights:

You, as a parent, have a right to understand what is going on with your child, and you have the right to seek a second medical opinion if you do not feel comfortable with the first.  Yes, some doctors find it a bit insulting, but most doctors will not have a problem with that choice.  After all, it is YOUR child, and you are a part of this team.

Your child has a right to proper medical treatment.  You may want to request the document “Parameters of care” from the Cleft Palate Foundation (1-800-24-CLEFT) to help to familiarize yourself with what is considered to be the minimal care required for reconstruction of cleft lip and palate.  This document will be invaluable, should you run into issues with the insurance company.  

Your child has a right to educational intervention from an early age.  Early Intervention is available in every state.  They provide intervention up to age 3.  For children with cleft, this could include speech therapy, as well as occupational therapy and feeding clinics.  A child with a cleft will typically qualify for Early Intervention.  After age 3, the public school district is mandated to provide services. (In some states, the age at which public school districts must provide appropriate services may be younger.)

Head Start, while usually income-dependent, also must provide a certain percentage of slots to children who are considered Special Needs.  A child with a cleft is, in fact, considered to have special needs, and therefore, may qualify by age 3 or 4 to participate in Head Start. 

Depending on your income, you child may qualify for Children’s Medical Services.  This is a federally mandated, state-provided insurance program that is offered to low income children with qualifying medical conditions.  (Adopted children qualify regardless of income.) 

Depending on the State you are in, certain procedures are mandated to be covered by your insurance.  For example, a lip revision is not allowed to be considered “cosmetic” in most states.  If your child has had continual coverage, and there is a change in insurance carriers, your child’s cleft cannot be considered a “pre-existing condition.” 

In terms of insurance, you have the right to appeal any decision you feel is in error.  Keep a record of any communication you have with insurance representatives as well as medical professionals.  Be sure to keep a log of all phone conversations, including the time and date, the name of the person you talked with, and the gist of the conversation. 

You also have a right to case management, provided by the insurance company.  Federal law mandates this person’s existence.  His or her job is to see to it that you and your child get all that is coming to you.  This person is employed by the insurance company, but the job of the case manager is to advocate for YOU.  Use this person whenever necessary as a valuable resource.

Your child has a right to an IEP.  An IEP is an individualized educational plan and is mandated for any child with special educational needs.  Because a cleft often necessitates speech therapy, your child should have an IEP in the school she attends.  An IEP is a legal mandate between the school district and the child.  Anything promised on the IEP is to be provided by the school over the next year.  Goals are stated and objectives are delineated to define how those goals are to be reached.  Every objective is measurable and specific persons are identified as responsible for seeing them happen.  The IEP is a legal document that ensures your child’s educational needs are met.  You must be present for each IEP meeting, or you have to waive that right.  My advice is that you never waive that right. 

Become familiar with pertinent laws.  Get to know your State laws affecting your child. Also, become familiar with IDEA and the Americans With Disabilities Act.  Talk with your social worker on your craniofacial team, the counselor at your child’s school and, when necessary, the case manager with your insurance company.  It is the job of each of these persons to ensure your child’s rights. 

There is no substitute for an informed and active parent in a child’s life.  Be informed, be active, and be assertive.  Do not be adversarial, and be the captain of your child’s team!  Advocate effectively.  If you don’t – who will?

=====

Joanne

Mom to Jacob (UCLP), Joey (BCLP) and Jessica (BCLP)

 

 


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