How Do We Pay For It All? Undivided’s Guide to Funding Resources

Article
Nov. 2, 2021Updated Aug. 4, 2022

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.

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Regional Center

Medi-Cal

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.

CalABLE

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.’”

Read more about CCS eligibility and services here.

Head Start

California Head Start offers early learning programs for children with and without disabilities ages 0 to 5. These programs are federally funded and free to low-income families, foster children, those experiencing homelessness, and those who meet other eligibility requirements. Head Start programs focus on school readiness and encourage parental involvement.

Self-Determination Program

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.”

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.

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Contents


Overview

Regional Center

Medi-Cal

CalABLE

California Children’s Services

Head Start

Self-Determination Program

SELPAs and LEAs

Special Needs Trust

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