Squeaky wheels get the grease. I’ve effectively used the same advocacy steps in tough medical, educational, and insurance challenges.
My challenges?
- Medical – because of a rare blood incompatibility (PLA1-), I destroy baby platelets. My son’s pregnancy included 4 PUBS, 5 weeks of high dose IvIgg treatments, and a month-long hospital stay.
- Educational – 1 of my children needed intensive early intervention.
- Insurance – 10 years ago, our home burned, and we had to rebuild.
I used the same steps to get my son medical treatment he needed, obtained needed speech therapy, and rebuild our home.
- Assess. Determine the issues, the players, and your resources.
- Organize. I use binders with dividers and prep like I’m an attorney getting ready for trial. During my son’s pregnancy, I kept a file of all diagnoses, lab results, and insurance correpondence. We took it to each appointment and procedure. With our IEP meetings, I kept a binder with diagnoses, insurance correspondence, school correspondence, along with applicable state and federal laws. For our fire recovery, I compiled a file bucket for claim information, orders, and contractor estimates.
- Plan for meetings. Before tough meetings, write your talking points. Simplify them to 3-4 points and 1 to 2 goals. Keep those in front of you to stay focused. Just before a tough meeting, I pray, asking God to help me do what’s needed.
- Delegate. Evaluate your talent pool and delegate. Delegate roles during meetings – who argues, who takes note, and who’s the good cop.
- Find experts. During my son’s pregnancy, I found the world’s leading expert in New York, spoke with him, and convinced insurance to cover his consultation. With our speech therapy issue, I found the world’s leading expert (at Vanderbilt in Nashville, TN) in his problem, took my son to meet him and be diagnosed, and asked him to help us advocate for services in our local school system. When we disagreed with our fire reconstruction contractor on replacement of a bedroom ceiling, I brought in an engineer friend who backed up my concerns; after it was demolished, they found mold growing in it post fire.
- Use the Internet. Tweet, email, and blog to find other resources.
Sometimes, with those you love, your job is to be the squeaky wheel. Your agenda is their health and well-being – not policy, protocol, or bottom lines. Squeak loud, early, and often till you get the needed grease.
This is a chess game – with lifechanging stakes. Sometimes, the survival of a crisis depends on who’s the best advocate.
Advocate. Protect Your Own.
Mary,
All great points. I have always said knowledge is power. When my husband feel this summer and couldn’t walk, I needed to get him home for surgery and recovery. Everyone said it couldn’t be done. Those words always set me off. With knowledge, planning and teamwork we got him home, on an airplane with a rented wheelchair and to the hospital with the only hitch being the heat. And there are always people willing to help if you only ask.