How Do We Pay For It All? Undivided’s Guide to Funding Resources
Funding your child’s medical and therapeutic needs can be tricky, even in the best of times. Familiar avenues of support outside of private health insurance, such as Regional Center and Medi-Cal, may step in when your insurance will not cover a service or support your child needs — but what happens when they won’t? We talked to Undivided’s Public Benefits Specialist, Lisa Concoff Kronbeck, about how to pay for medical needs — from durable medical equipment (DME) to alternative and out-of-network therapies — that are sometimes harder to get approved through traditional means.
Medi-Cal can be an invaluable source of health care coverage for children with disabilities. Usually Medi-Cal is a means-tested program, but some children with disabilities may be eligible to receive Medi-Cal coverage regardless of family income. For example, children with developmental disabilities who are Regional Center clients may qualify through Medical’s Home and Community-Based Services for the Developmentally Disabled (HCBS-DD) Waiver, otherwise known as an institutional deeming waiver.
It’s important to apply for the Medi-Cal waiver as soon as possible, particularly if your child does not qualify for Regional Center services. The HCBS-DD waiver is available to all eligible Regional Center clients, but other waivers, such as the Home and Community Based Alternatives Waiver, may have a waiting list of months or even years.
We took an in-depth look at how Medi-Cal can work as secondary coverage and to pay for expenses that aren’t covered by private insurance, such as durable medical equipment (DME) or consumable medical supplies, in this article.
Note that as of January 1, 2022, changes are being made to fee-for-service Medi-Cal; read about them here.
California Children’s Services
California Children’s Services (CCS) is a state program that provides and funds diagnostic and treatment services to children under age 21 with CCS-eligible medical conditions. CCS may provide support for families who have exhausted other options, or for children with significant medical needs who aren’t otherwise eligible for services through Regional Center or Medi-Cal. (Like Regional Center and Medi-Cal, CCS funding is also secondary to insurance.)
CCS eligibility is usually based on income: a family’s adjusted gross income must be less than $40,000, or the child’s out-of-pocket medical expenses must be more than 20% of the family’s income. However, if the child is a Medi-Cal recipient, CCS will not look at family income.
If your family exceeds the income limit and your child is not enrolled in Medi-Cal, your child may still be eligible for occupational and physical therapy services provided free of charge through CCS’s Medical Therapy Program. This program is available to children with certain musculoskeletal disabilities whose physical and occupational therapy needs are both academically and medically necessary. The Medical Therapy Units are housed at designated public schools, and providers are often part of the IEP team. In cases of financial need, the CCS Medical Therapy Program can also help fund durable medical equipment.
Lisa Concoff Kronbeck advises that anyone using state resources like CCS keep careful documentation of payments and denials. Parents should seek coverage from their private insurance plan even if a denial is anticipated, because the written denial is part of the requisite documentation for most public agencies. “CCS funding isn’t going to kick in unless you have a denial—and not a medical necessity denial,” Concoff Kronbeck explains. “Usually it’s just a denial based on ‘We don’t cover that.’”
The Self-Determination Program (SDP) offers an alternative, more flexible way to receive Regional Center services. Participants can choose the supports and services they want, and pay for them using a budget agreed upon with their local Regional Center. Anyone who is eligible for Regional Center services under the Lanterman Act is also eligible for SDP. Learn more about the basics of Self-Determination here.
SDP participants are required to create a person-centered plan (PCP) that outlines their short- and long-term goals, and the services and supports needed to reach them. They must also create a spending plan that details how the budget will be spent. As Disability Voices United puts it, the person-centered plan is “not about what’s available. It’s about what’s possible!”
The whole process can be complicated, so Regional Center provides $2,500 to use toward an Independent Facilitator, who can act as an advocate and help with budget planning, developing the IPP, and finding and coordinating services and supports.
“It takes time in the beginning,” explains Carla Lehmann, an Independent Facilitator with Undivided. “You have to fill out forms and do some work, but after you’re in, it’s easy … it gives you freedom of choice.”
Your budget can be used to pay for a wide array of services and supports, as long as they are tied to a goal in the PCP. For example:
Specialized medical equipment and supplies that are not available under Medi-Cal or via generic resources
Home accessibility adaptations such as ramps, grab bars, and accessible doorways
Computers, communication devices, GPS tracking devices, and other electronics
Recreational activities such as swimming, horseback riding, karate, music, and drama
“Participant-directed goods and services” can also be included in the plan. This refers to any services, equipment, or supplies that aren’t available through another funding source (such as insurance or your child’s school) and are not otherwise provided through the SDP waiver or Medi-Cal. You don’t need to use pre-approved providers or vendors, which allows room for creative planning in the spending plan and the IPP.
“It’s easier to find providers because they get paid better,” Lehmann adds. “There is more freedom in who you can use; you can find someone without a waiting list, and you can use SDP for services that are not traditionally approved by the Regional Center.”