I recently spoke at an MPS family meeting about advocacy in different contexts and was asked by several families to compile the presentation and slides and share them. Since the slides really don’t tell the whole story, I thought it might be more helpful to create a series on advocacy, highlighting the different areas where it might come into play for MPS families, and sharing the information from the presentation.
First, I wanted to talk about advocacy in general. If I were to break it down to its simplest form, I would put effective advocacy into four steps.
Let’s talk about each step specifically.
Step 1: Educate yourself
The point here is how can you argue for something that you don’t know about? Generally, you hope to be as educated or more educated about whatever topic you are discussing than the other party. When we lack sufficient knowledge, we are less able to make our argument, less effective in responding to objections, and generally less confident in our position.
For example, before MPS or whatever special need may affect your loved one, you were probably more willing to accept and follow a doctor’s advice. I mean, he or she went to medical school, completed a residency, they knew what they were talking about, right? At least more than we did! They were more educated than us on the topic of medicine and health, and we knew it.
Now, that is likely no longer the case with most of our children’s doctors, if they have MPS or another rare disease, that is. We have switched places, hopefully, and often we are the ones more educated about MPS and its effects on our children. Our goal is for that to be the case in most situations where it is necessary for us to advocate for our children.
We need to know more about the therapy, service, equipment, funding, or other matter that we are requesting than the other side, or at least as much. And certainly, we should know more about how it applies to our particular child.
Step 2: Educate those you are dealing with
This could include just general education about your child and their needs, as might be the case in an initial IEP meeting. But more likely, it will also include educating the other party about the specifics of the subject of your request and why it is relevant to your child. It may include information about the law, what has been done previously or in other cases, or simply include stories and examples about your child.
An example might be in the circumstance of seeking a medically fragile Medicaid waiver. After you’d learned all you could about the criteria in your state, others that had qualified and why, and the process for qualifying (Step 1), you would educate those in position to evaluate your child about what qualifies as medically fragile, what your child is like, and why they fit those qualifications. Don’t assume they know or understand any of those things until they show you otherwise. They might, but kindly explaining things in the context of your situation is always the most helpful.
Step 3: Ask for what you need
Only after you’ve educated yourself and the other party do you then specifically and formally ask for what you need. If you are asking for several things, you lay each one of them out specifically.
Sometimes, if you’re lucky, you’ve done a great job in educating yourself and the other party, and if it is within their power to provide (and that ability is key also), this is all you’ll have to do. They will provide the requested item or service and you can rejoice for the provision for your child. We hope this will happen more often than not. When it doesn’t, however, you should consider whether to move on to Step 4.
Step 4: Kindly, but firmly, assert your rights
Unfortunately, people often fall into one extreme or the other when it comes to Step 4.
Some never, ever, use Step 4. They ask for something, are told no and that’s the end of it. I often see this happen in the context of IEP meetings. A parent requests say, more occupational therapy for their child, and the school explains that little Johnny doesn’t really need any more OT because they can work the activities into the classroom. Feeling intimidated or maybe even thinking that this might not be a bad idea, the parent says okay and never formally requests the OT such that it would have to be included in a notice of due process, along with an explanation as to why the request was denied.
On the other extreme are those parents who, maybe only in certain situations, demand every last iota of service for their child. Not that our children should not receive everything to which they are entitled under the law, but sometimes in the end, this can be both an ineffective strategy as well as a torch to the relationship.
Step 4 should be used with wisdom and with caution lest the other party simply feel the need to fight every request we make even if it is valid. In addition, one should be fairly sure that their request has a reasonable basis since parents who appear overly demanding are often less trusted when it comes to their child’s needs even if they are right, much less if they are wrong.
Sometimes Step 4 only involves that little push, that squeaky wheel, that sends it one step further so that the person who does have the authority to provide what your child needs has the opportunity to make the correct decision. Sometimes it involves a notice of due process. Sometimes it involves an administrative appeal. Sometimes it involves the media. One should consider the lowest amount of pressure first before threatening or resorting to higher ones, unless the timing or threat involved in the situation is urgent.
Hopefully, these four steps will be a simple guide to follow in most contexts where advocacy is needed. Stay tuned to upcoming posts about applying these steps specifically in the context of health care, education, clinical trials, social services, and other areas.