One of the simple things we do is both my husband and I have a one page cheat sheet on our daughter in our wallets. It includes: diagnosis, meds., allergies, insurance, and doctors with contact phone numbers. We also have one in an envelope on our refrigerator. This ensures her important data will be relayed as she can’t communicate it, and just in case we can’t. The National Family Caregivers Association recommends that some caregivers wear medical id jewelry for the same reason; for more information see www.thefamilycaregiver.org/press_room/detail.cfm?num=98 . There are some good forms used in childcare in our state that are good samples such as the universal health record www.state.nj.us/health/forms/ch-14.pdf care plan for children with special needs www.state.nj.us/health/forms/ch-15.pdf
For more comprehensive notes, I recommend the Build Your Own Care Notebook from the American Academy of Pediatrics found at www.medicalhomeinfo.org/for_families/care_notebook/ . Also emerging health information technology will allow information to be stored electronically. Life Ledger has caregiver plans for the elderly at www.elderissues.com and will be developing one for children with disabilities but for now it may be a good idea to look at the categories (social security, legal, etc.)
Besides the actual records, there are other things for caregivers of children with special needs to consider. For example, is your child’s medication refrigerated or does he/she use electrical equipment. What happens if there’s a power shortage? Do you have an emergency generator? Family Voices has many resources for emergency preparedness for both home and school, found at http://www.familyvoices.org/work/caring?id=0004 .
As I said earlier, I hope you never need any of this but as the Girl and Boy Scouts motto says “Be prepared”…just in case.