Family caregivers need to ensure that their children/family member’s medication is given at the right time, right dose, and right route (for example oral, injected, topical.) Correct management of prescriptions is the biggest influence on preventing hospitalization.
Tools for Family Caregivers
Organizing medicines can be challenging, especially for parents of children with complex needs. There are online tools and apps. that list the name of the medicine, what it looks like, which condition it treats, and the time and amount given – all on the same page. There is even a wallet size option so families can have the list on hand. Lastly there is a checklist for filling a pill organizer. There are also printable forms that parents can fill out if they prefer paper copies to apps. or being online. See Resources at the end for some of these tools, including MyMedSchedule illustration below.
What Affects Access to Medications?
1. Health Literacy
Research has shown that only 1 in 7 people can correctly read a prescription label. Health literacy is the largest barrier to health care access. See the diagram below on how to read a medication label.
Ø Limit to 30 days’ supply
Family caregivers can order Medicaid prescriptions up to 3 days in advance so if done monthly they won’t run out. This would also help them have a little extra on hand for emergency preparedness (natural disasters.)
Ø Medicaid as secondary insurance
Family caregivers may erroneously be told they must cover a copay. Another reason to refill 3 days ahead gives parents time to appeal. Medicaid should cover the rest after private, and sometimes Medicare, are billed.
Ø Pharmacy benefits and out-of-state authorization
If a child needs a non-formulary medication while hospitalized, parents may have to fill prescriptions outside of their home state. However, families can contact their state’s Medicaid office to get reimbursed later.
Ø Having both Medicaid/Medicare (“Dual Eligibles”)
Although there are SNPs (Special Needs Plans) for “dual eligibles”, it could be better to keep Medicaid and Medicare as separate plans due to the pharmacy benefits.
3. Specialty and/or Compounded Medications
Families need to make sure they know where to get prescriptions filled, if their insurance is accepted, and ask the hospital for an emergency supply. Note: some hospitals will forward a special formula to local chains if they agree to fill it.
4. Mailed medications/special storing
Some pharmacies will agree to have mailed medications delivered and held for families, which helps if a child has many emergency visits and a family may not be at home for the package. If families can’t afford emergency generators for refrigerated medicines, parents can also ask a local fire department if they can store medicines there in a power outage.
5. Financial problems
Family caregivers shouldn’t try to make medication last longer by lowering a dose because it may not work as well or at all. Help paying for medicines is available to families (see Resources.)
Family caregivers can overcome obstacles to getting medications which will lessen stress on parents, and keep their child with a disability healthier.
-My Medicine Record free printable form
Help paying for prescriptions
-Partnership for Prescription Assistance
-Pfizer Pathways (includes non-Pfizer medications)
Medical Prescription Tips for families
Statewide Parent Advocacy factsheet
Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269. She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.