Source: Indys Child Parenting Magazine

Affording Health Care for Kids with Special Health Needs
Understanding and accessing your available financial options

by Carrie Bishop

March 01, 2013

How big an issue is money for parents of kids with special health care needs? In a word, huge.“It can be life changing. It can mean bankruptcy. It can be whether a kid gets what he needs or not,” says Jane Scott, director of family support for About Special Kids, a parent-helping-parent organization that helps families understand programs for which they may qualify and walks parents through the application maze.

While medical options once unimaginable are today improving and saving lives, affording necessary care isn’t necessarily easy. The first financial step forward for families is learning about established resources. Jennifer Akers, project coordinator at Family Voices Indiana, another parent-to-parent organization that provides information and resources for families with kids who have special needs, provides a good case study in how to access the system.Her daughter Grace, 14, has Moebius syndrome and is covered by private insurance. If private insurance won’t cover a particular cost, then the money comes from her Medicaid Disability. If that does not pay for a particular service, like respite or music therapy, then the money comes from her Medicaid waiver. “I have as much coverage as I can and there’s still things nobody covers that I’m responsible for. There are still out-of-pocket costs. The only way to make that doable is to access all the appropriate programs you can,” says Akers. A good start is reaching out to Family Voices or About Special Kids. Parents may not realize programs exist that can help pay for things like incontinence items or locate used specialized equipment. Inquire, but first read on to understand what you are entitled to through broad sweep programs.

Private insurance will be the primary source of coverage for children who have it. Scott advises parents to obtain a copy of the full insurance policy, not just the summary of benefits. Also, fully insured individuals can tap the Indiana Department of Insurance for help with claims or just understanding how the policy works. Those who are self-insured, usually employees of big companies, should talk with their human resources benefits team when policy or claim questions arise. First Steps connects infants and toddlers in need with area health, education and social services to affordably give Indiana children birth to age three a wide array of early intervention resources. Hoosier Healthwise is Indiana’s Medicaid program and is income dependent. A person cannot have both Hoosier Healthwise and Medicaid Disability. If a child is eligible for both, Medicaid Disability may provide more comprehensive coverage and approve more therapies. Medicaid Disability can provide access to the specialty healthcare many kids with health conditions need. While the program has financial and health restrictions for participants, families over income for Medicaid can ask about the Medicaid with spend down. “You reach it faster than you think you would,” says Akers. “It acts as a safety net. It saves (families) from a catastrophic bill that they really can’t manage. A lot of months it may not get activated, but with the unpredictability of some medical conditions you may end up in the hospital and it would kick in once they meet the spend down.”Medicaid Waivers support individuals with disabilities in the home and community. There are two kinds: medical and developmental. The waiting list for waivers used to be well over a decade, but recent changes have shortened the wait time significantly as well as capped the budget to $16,250 per year for most individuals. Waivers do not take parental income into account, so most kids are eligible financially. Plus the waivers cover things that insurance may not like music therapy and respite services. Of note, families on the wait list for the developmental waiver can access money for limited respite if the funds are available.

Indiana Children’s Special Health Care Services is supplemental medical coverage for children ages 0 - 21 with a diagnosis described in the plan. There are financial restrictions, but for those who qualify the program provides for well- and sick-child medical visits, prescriptions, specialty care related to the eligible medical condition, routine dental care and other services.

CHOICE or Community and Home Options to Institutional Care for the Elderly can help with case management services, assessment, and in-home and community services, but can only be utilized if the child or requested services are ineligible for Medicaid.Understanding your child’s health care options can be overwhelming. Connecting with Indiana Family Voices at www.fvindiana.org and About Special Kids at www.aboutspecialkids.com can help families along this complicated process.