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.
In California, early intervention services are provided to children with disabilities ages 0–3 through the Early Start program, which is managed by the Department of Developmental Services (DDS) and the California Department of Education. Services and equipment that a child needs to implement the goals outlined in their Regional Center Individual Family and Services Plan (IFSP) may be funded out of Early Start. This includes adaptive equipment like standers, lifts, and FM systems, but will typically not include medical equipment. Services such as occupational therapy, physical therapy, and speech therapy can also be provided, as can respite, in-home parent training, center-based services, and non-public agency services.
After age three, the school district takes on responsibility for many services. Some children will be eligible for continued Regional Center services under the Lanterman Developmental Disabilities Act after they turn three years old, if they have been diagnosed with a qualifying developmental disability as defined by California law. Learn more about this transition here.
It’s important to note that Regional Center is “the payer of last resort,” meaning they are required by law to use all available resources — including generic resources like insurance, state and federal programs, and the public school system — before paying for services. It is the Regional Center’s responsibility to look into other options for payment, although it can pay for services while looking for other funding sources.
Exceptions may be made for those who are in the process of applying for coverage from other funding sources. For example, in some instances a Regional Center may agree to fund a therapy for a limited period of time while a child is on a waiting list for a suitable provider to be funded by private insurance. A Regional Center might also agree to fund incontinence supplies for a short period of time while a child waits for their Medi-Cal waiver application to process.
Using Regional Center to pay for copays and deductibles
Regional Center will cover copays and deductibles under the following conditions:
the related service or support is covered (fully or in part) by health insurance that the child receives through a parent, guardian, or caregiver;
the family’s gross annual income is equal to or less than 400% of the federal poverty level; and
there is no other third party that is liable for the cost of the service or support. This includes Medi-Cal, Medicare, school districts, federal Supplemental Security Income (SSI), and the State Supplementary Payment (SSP) program.
For example, this year, according to the 2021 poverty guidelines, a family of three with a gross annual income of $87,840 or less would be eligible if all other criteria are met.
A few exceptions
There are some cases where families whose income is over 400% of the federal poverty level can still be eligible for help with copays or deductibles through their Regional Center. These include:
extraordinary events that impact a caregiver’s ability to meet the care and supervision needs of the child, or the caregiver’s ability to pay the copay or deductible;
a catastrophic loss that limits the ability of a caregiver to pay, and creates a direct economic impact on the family (for example, natural disasters or accidents involving major injuries of an immediate family member); or
significant, unreimbursed medical costs related to the care of the child or another dependent child who is also a Regional Center consumer.
In these circumstances, the primary health plan member must provide Regional Center with proof of income. The same caregiver must also inform Regional Center of any changes in income if those changes push the family’s income above or below the income requirement.
Coordinating funding and services
Regional Center is legally required to coordinate services for every person they serve to make sure the right resources pay for the right things; they will assign a service coordinator to your child to (among other responsibilities) help you figure out how to use all of your resources in the best way possible.
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.
While a CalABLE account isn’t exactly taking the burden of payment away from an individual or their family, it can help families save tax-free, accrue interest, and accept financial gifts from friends and family. As of January 2022, families can contribute up to a combined annual total of $16,000, with an account maximum of $529,000; while Medi-Cal/Medicaid eligibility will never be affected by CalABLE savings, an account balance over $100,000 will jeopardize a child’s Supplemental Security Income (SSI) and other government benefits. Here’s how it works.
An individual is automatically eligible for CalABLE if they have a disability that occurred before age 26 and they receive benefits under Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI). If someone meets the first requirement but does not receive benefits under SSI or SSDI, they may still be considered eligible if they:
meet Social Security’s criteria for significant functional limitations, and
receive a letter of certification from a licensed physician.
An ABLE account usually costs less to establish than a Special Needs Trust, and offers the beneficiary more control over savings. (Read more about these options in our detailed article here.) It can also be used to pay for any expense used to maintain or improve an individual’s health, independence, and quality of life, as long as it relates to their disability in some way. This includes copays and insurance premiums, personal care aides, therapies, tuition and supplies from preschool through college, mental health expenses, DME, assistive technology such as AAC devices, housing costs, transportation costs, legal fees, and more.
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 at Exceptional Connections. “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.”
SELPAs and LEAs
In California, all school districts and county school offices belong to SELPAs, or Special Education Local Planning Areas, which were formed in 1977 based on geographical region to meet the needs of all California children with disabilities. (There are now over 130 SELPAs in California.) SELPA funding is based on the number of students district-wide, including students with and without disabilities. SELPAs also coordinate with local education agencies (LEAs) to provide assessments, services, and equipment for children with disabilities.
SELPAs are responsible for both school-age children with disabilities and children 0–3 in the Early Start program. For school-age children, SELPAs maintain and oversee special education programs and services, and can also provide adaptive equipment and other accommodations and devices that are outlined in a student’s IEP. While equipment purchased through the SELPA belongs to the SELPA and will have to be returned at the end of each school year, it is a valuable way for kids with disabilities to access equipment that may otherwise be difficult to obtain. (Moreover, thanks to the recent California Assembly Bill No. 605, SELPAs and LEAs are required to provide students with continuous access to their AAC devices at school, in their homes, and in the community, which means that students can bring those devices home with them after school hours and during all school holidays, including summer break.)
Both SELPAs and Regional Centers provide Early Start services for children 0–3, which can be somewhat confusing. SELPAs that receive both state and federal funding are considered “dual providers,” and can provide any services a child is eligible for, as can Regional Center (if the child is RC–eligible). If a SELPA receives only federal funding, they can only provide services for children with what the IDEA categorizes as a low-incidence disability — visual impairment, deaf and hard of hearing, and/or orthopedic impairment — but not if the child is already receiving Regional Center services. Services that a SELPA could provide to a child with an eligible low-incidence disability include physical, occupational, speech, and behavioral therapy, as well as assistive technology (AT). If a child has both a low-incidence disability and a cognitive impairment, medical needs, and/or developmental disabilities, Regional Center would provide these services as the payer of last resort.
Special Needs Trust
A Special Needs Trust (SNT) is a trust that enables people with disabilities to hold assets, such as money and real estate, that would otherwise make them ineligible for public assistance benefits.
There are strict rules about what a SNT can’t pay for. Paying for food or housing, for example, could affect an individual's public assistance benefits. On the other hand, a SNT can be used to pay for things that are not covered by other sources. This includes but is not limited to:
Therapy or rehabilitation services
Medical and dental services that aren’t covered by other sources
Durable medical equipment
Social and recreational activities and equipment
Travel and entertainment
Computers and other electronics
Health insurance expenses
Vehicles or other transportation
Learn more about Special Needs Trusts in our detailed article here.
In short, navigating funding systems is no more fun than filing your taxes, but we hope this overview will help you see a few new avenues of funding that weren’t there before.