I’m coming from several angles here. First of all, we know as caregivers that there is a financial strain on families. Last time I checked, we were averaging $15,000/year out-of-pocket for medical and educational items not covered by insurance or school. Everyday things we did cut back expenses. For example, we only use our cellphones for emergencies. The only people that have that number are folks caring for our child like the school nurse and we make sure they know it’s for urgent matters only. No family or friends have the number because when the call for the kidney transplant comes through, we need to be reachable. If we didn’t have time to read magazines, we cancelled subscriptions or read things at the library. We also, if we had time, borrowed books and videos from the library instead of going to the movies. We still don’t have cable TV, just antennae service for less than $20/month (now that TV is digital) and we get all the major stations. And of course we use price comparison websites, sales, and coupons. Think about all the conveniences your family uses: do you really need them, or just want them?
Besides the little stuff, bigger things you can do are make sure your insurance covers what it’s supposed to. Check for medical errors. Appeal denied claims (only 1/3 of families do this even though it’s turned around in their favor half the time on the first appeal). If you have a second insurance company (including Medicaid), they should pick up what the first didn’t cover. Some states like NJ have a Catastrophic Illness Relief Fund. Or if your child is on special dietary items not covered like food thickeners, caloric supplements, etc. sometimes if you’re ordering directly from the company they’ll give you a 50% discount. You can check with your Title V agency for help with funding these things found at https://perfdata.hrsa.gov/mchb/mchreports/link/state_links.asp. You can also check for other help with things like housing, utilities, food, etc. at www.benefits.gov/benefits/browse-by-state .
Financial planning can also include things like special needs trusts so that your child won’t lose eligibility for future benefits. For example, many children don’t qualify for Medicaid or Supplemental Security Income because until they’re 18 the parent income counts. You may also want to decide if your child will need guardianship at 18 (legally you have to do this regardless of the severity of the condition) if your child can’t make educational or medical decisions (note that some states have flexible or limited guardianships to retain some rights). If your child has developmental disabilities, you may be entitled to additional assistance such as respite, assistive technology, behaviorists, camp, stipends etc. You can find your state council on DD at www.nacdd.org/about-nacdd/councils-on-developmental-disabilities.aspx . Note: You can also continue your child’s private health insurance due to DD by getting a “certification of the handicapped” form from your employer.
Lastly, you want to make sure your child is as independent as possible as an adult regardless of disability. In every state there are Centers for Independent Living which helps students get life skills, postsecondary education, and employment. You can find your local CIL at www.ncil.org/directory.html .
Outside of your immediate family, you may want to be involved in education or healthcare advocacy which will affect not just your child but other families. With federal and state budget cuts, some children aren’t getting their related services in special education, while others have been denied healthcare benefits. For education, you can contact your Parent Training and Information Center at www.parentcenternetwork.org. For health, you can contact Family Voices or the Family-to-Family Health Information Center in your state at www.familyvoices.org. These organizations have action alerts on issues affecting our kids. Even if you have time to just make one phone call or email, it matters. By advocating for your child, you’re helping other families in the same situation. By implementing policy change, individual families won’t have to keep fighting for the same things.
Breaking the Link Between Children’s Special Healthcare Needs & Financial Hardship
National Family Caregivers Association financial toolkit