“Low incidence” essentially means affecting less than 1 percent of the population. According to IDEA, low incidence includes the following disabilities:
Note that the word “impairment” is part of the IDEA’s official language. We at Undivided typically use “low vision, partially sighted, or blind” for visual impairment; “Deaf or hard of hearing” for hearing impairment; and “intellectual disability” for cognitive impairment.
California Education Code differs from the federal definition of low incidence in that it does not include intellectual disability, instead defining low incidence as “a severe disabling condition with an expected incidence rate of less than 1 percent of the total statewide enrollment in kindergarten through grade 12. For purposes of this definition, severe disabling conditions are hearing impairments, vision impairments, and severe orthopedic impairments, or any combination thereof.”
While IDEA does not include autism in its definition of low incidence, some states — including Texas, Ohio, Tennessee, and Minnesota — do describe autism as a low-incidence disability.
As for the actual percentage of children with these disabilities, here’s what the data says:
IDEA, the federal law governing special education, is applicable to all children with disabilities, but it contains provisions specific to children with “low incidence” disabilities, including requirements for funding their services such as therapies and equipment.
For details about what IDEA covers and what it means for our kids, as well as what other resources are available for funding our kids’ care and medical needs, we asked Non-Attorney Education Advocate Mary Peitso and Undivided Public Benefits Specialist Lisa Concoff Kronbeck.
| Disability category | Average in all U.S. states, ages 5–21 | Average in all U.S. states, ages 3–5 | Percentage in California, ages 5–21 | Percentage in California, ages 3–5 |
|---|---|---|---|---|
| All disabilities | 10.05% | 5.29% | 8.96% | 3.53% |
| Autism | 1.16% | 0.66% | 1.55% | 1.36% |
| Deaf-blindness | <.01% | <.01% | <.01% | <.01% |
| Hearing impairment | .09% | .06% | .12% | .06% |
| Intellectual disability | .66% | .01% | .46% | .09% |
| Orthopedic impairment | .03% | .03% | .07% | .03% |
| Visual impairment | .03% | .01% | .03% | .01% |
(Source: IDEA Section 618 Data, 2022–23)
Percentages hide the fact that these are all individual students with unique support needs in school. To give you an idea of numbers:
Number of children and students ages 3–21 served under IDEA, Part B, by disability category
| Disability category | Number of students across all U.S. states and territories | Number of students in California |
|---|---|---|
| All disabilities | 7,630,445 | 805,289 |
| Autism | 990,137 | 149,127 |
| Deaf-blindness | 1,872 | 84 |
| Hearing impairment | 69,711 | 11,021 |
| Intellectual disability | 426,993 | 40,153 |
| Orthopedic impairment | 31,101 | 6,583 |
| Visual impairment | 25,098 | 2,498 |
(Source: IDEA Section 618 Data, 2022-2023)
For more information on each of these low-incidence disabilities, see our full articles on intellectual disability, low vision, cerebral/cortical vision impairment, orthopedic impairment, and d/Deaf and hard of hearing.
Note that low-incidence disabilities can occur with other diagnoses. Peitso notes that some common co-occurring conditions are autism, attention deficit hyperactivity disorder (ADHD), epilepsy and seizure disorders, mental health disorders such as anxiety and depression, speech and language disorders, and sensory processing disorders.
In California, Special Education Local Plan Areas (SELPAs) are responsible for providing programming for kids ages 0–22 who have disabilities, including orthopedic impairment, vision and hearing impairments, and multiple disabilities. 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).
The amount of additional funding each SELPA receives is based on the number of students with low-disabilities residing there. Larger school districts might have their own SELPA, while smaller districts combine to form a SELPA.
Anyone can self-refer to their SELPA. If your child is under age three with potential or diagnosed hearing loss, vision loss, or orthopedic impairment, start by contacting your local SELPA and asking for a comprehensive assessment. Find your SELPA by scrolling down to your county on this CDE page. Once you contact your SELPA, a staff member will coordinate the assessment process and work with you to develop a service plan based on your child’s needs.
An infant or toddler with low vision, low hearing, or orthopedic impairment might be eligible for early intervention services under Part C of IDEA. According to SELPA Administrators of California, early intervention services could include “direct instruction, collaboration and support for families, Deaf and hard of hearing services, occupational therapy, orientation and mobility services, speech therapy, transition planning, and visual impairment services.”
A child who also has a developmental disability or delay can receive services from both the SELPA and their local Regional Center (more on Regional Centers in the public benefits section below).
For school-age children (preschool and up), SELPAs maintain and oversee special education programs and services, and they can also provide adaptive equipment and devices that are outlined in a student’s Individualized Education Program (IEP). Note that equipment provided by the SELPA belongs to the SELPA and must eventually be returned, but it is a valuable way for kids with disabilities to access equipment to be used at school.
SELPAs coordinate with local education agencies (LEAs). According to the California Department of Education (CDE), LEAs in California are tasked with funding “specialized services such as interpreters, note takers, readers, transcribers, and others who provide specialized services to students with low-incidence disabilities.” By law, these services must be 1) “provided by appropriately credentialed or trained individuals” and 2) written into a student’s IEP in order to be provided.
If your child doesn't have an IEP
If your child does not yet have an IEP, the first step is to request a comprehensive assessment from your school district. Peitso advises, “Always make that request in writing, either via email or a written letter that’s sent to the school or hand-delivered.”
A comprehensive assessment for an IEP will look at all areas of suspected disability, not just low-incidence diagnoses. Peitso says, “They should be having a school psychologist involved to do cognitive assessments. There should be a speech-language pathologist involved for any communication issues — receptive language, expressive language, and also pragmatic language. There should be an OT involved for any motor skills or sensory processing issues or suspected issues, a physical therapist if there are mobility concerns, and a special education professional for educational needs.” Learn more about how to request and review assessments in our article IEP Assessments 101.
If your child already has an IEP
If your child already has an IEP and you have additional concerns, you should also begin by requesting an assessment. Then, you and your child’s IEP team together can discuss how the school will provide the supports and services your child needs.
Eligibility for an IEP is based on whether a child has one of 13 qualifying diagnoses, including Deafness, Deaf-blindness, hearing impairment, intellectual disability, orthopedic impairment, or visual impairment including blindness.
For children with multiple disabilities, their eligibility for an IEP will be based on the diagnosis that is “most adversely affecting the student in their school environment and learning,” Peitso says. This involves a discussion among the members of the IEP team.
If your child has a co-occurring diagnosis that already qualifies them for an IEP, should you still include their low-incidence disability? Yes, because it helps make sure your child can access equipment and assistive technology through the IEP process. Cyndi Davis, Orientation and Mobility Expert and Teacher at California School for the Blind as well as an Adjunct Faculty member at San Francisco State, says, “There is low-incidence funding because a lot of tools and equipment are expensive. The government provides low-incidence funding that goes through your home district, and so they would be able to order supplies and add you to their list of low-incidence funding. The reason that distinction is really important is when you’re in an IEP meeting, you want to make sure that if your child qualifies in one of the low-incidence areas, that is listed as one of their reasons for having an IEP. If you have a child who has many needs, there’s always so many different things that you can list, but there’s additional funding for those low-incidence areas."
Dr. Sonja Biggs, Teacher of the Visually Impaired and Co-Founder and President at Sonja Biggs Educational Services, says, “It has to be determined by assessment what this child needs, or else the school won’t get it for them. It has to be on their IEP from the assessment. So when you’re getting AT for a student and you’re using low-incidence funds to fund it, they have to see your assessment and your recommendations, and then they have to see that it’s on the IEP with goals before the school will fund it.”
If your child is determined not to be eligible for an IEP, the school might offer a 504 plan instead to support their access to education. However, there are a few key differences between an IEP and 504 that you should be aware of:
While the services and supports that are written into a child’s IEP will vary because every student’s needs are different, here are some common ways that Peitso sees students with low-incidence disabilities supported through an IEP:
Behavior support: if a student has maladaptive behaviors in the classroom, the parents can request an assessment that results in a behavior intervention plan.
Academic support: assessments can help determine whether a student needs any specialized academic instruction to help them make academic progress in the classroom.
Transportation: if the child needs transportation to and from school in order to access their special education, parents can ask for it in the IEP.
Assistive technology: AT is usually documented in the IEP as assistive technology needed for them to do and to access their work in the classroom, but it can also be listed as an accommodation in a 504 plan.
AAC: a simple system that a child relies on when they’re younger, such as PECS, might not be suitable as they get older. An AAC specialist can perform assessments and recommend other systems that might be more effective. Parent training to use the AAC system can also be written into the IEP. Peitso says, “Try to get that written in the IEP as consultation time with the service provider so that the service provider can train the parents or talk to parents and give the parents updates and the teachers as well.”
Parent training: in addition to training on any device that the child uses at school, Peitso recommends that parents request training on what their rights are in the IEP process.
Health and nursing support: note that these services can be accessed by students with medical conditions and orthopedic support even when no IEP is necessary.
Additional supports that may be accessed through the IEP depending on your child’s disability include a Teacher for Visually Impaired (TVI), orientation and mobility (O&M) services, and O&M supports such as a cane.
When working with IEP teams, Peitso has a few tips for parents:
While SELPAs are responsible for providing services and equipment that helps your child access a free and appropriate public education, your child is only in school for part of the day. For durable medical equipment (DME), therapies, and other services that your child needs at home and in the community, your health insurance will be the primary resource for funding.
Concoff Kronbeck says, “Health insurance is always going to come first for anything that health insurance covers; regardless of what agency they’re going to, if it’s something that the health insurance is responsible for, the health insurance has to pay first.”
For example: there’s a wide variety of equipment that a child with a low-incidence disability might require in order to be safe in their home. This could include orthotic inserts, ankle bracelets, a wheelchair, gait trainers or walkers, or a speech-generating device like AAC. Concoff Kronbeck says, “If this is for use in the home, you always have to start with the medical insurance.” Insurance won’t pay for school-based services, but it might pay for something the child can use at both school and home. Peitso says that if a device will also be used at school, parents should ask insurance for it first because it will generally be faster.
Children with low-incidence disabilities can qualify for public benefits programs in California, but it’s rarely straightforward. Concoff Kronbeck says, “It depends on the diagnosis and how significantly the child is impacted.”
Regional Center
Regional Centers in California provide services to individuals with developmental disabilities and delays, so if your child’s only disability is low vision or hearing, they are unlikely to qualify. However, for children with both low-incidence and developmental disabilities, Regional Center can offer a variety of services to supplement what insurance and the school district provide.
Children under age three who have a developmental disability diagnosis or even a suspected developmental delay can apply for services from Regional Center’s early intervention program. Infants and toddlers who are at risk of developmental delay may qualify even if they’re not going to be eligible after age three.
For children over age three, qualifying diagnoses for Regional Center services include autism, epilepsy, cerebral palsy, intellectual disability, and the “fifth category,” which includes conditions that are substantially similar to or requiring the same treatment as intellectual disability and are not solely physical in nature. In addition to a qualifying diagnosis, the child must have substantial functional limitations. You can learn more about eligibility and how to apply in our article about services under the Lanterman Act.
Children with low-incidence disabilities who are already receiving services like therapies and equipment from their SELPA can also receive supplementary Regional Center services. Concoff Kronbeck says, “Between the two agencies, they’re going to assess who is responsible for what service.”
Parents who find that the SELPA’s services are inadequate can request more appropriate services from Regional Center. If the Regional Center issues a denial, saying the service is already being provided by another resource, parents should provide documentation about what the SELPA is providing and demonstrate that it’s insufficient to meet their child’s needs. For example, a center-based early childhood education program with only one other child in attendance likely wouldn’t provide sufficient socialization opportunities.
Medi-Cal
There are two primary ways a child can qualify for Medi-Cal, California’s public insurance program: by having household income under a certain threshold or by applying through a program that waives the income requirement.
The HCBS waiver is how many Regional Center clients gain access to Medi-Cal. Children with low-incidence disabilities who are also developmentally delayed may be eligible, depending on their medical needs, but low-incidence disabilities alone do not qualify for Regional Center services.
If a child is not eligible for Regional Center, the next option to consider would be the HCBA waiver, which is for people who require skilled nursing services at home because of complex medical needs. This waiver is based not on diagnosis but on needs, so children with low-incidence disabilities might qualify if they have significant care needs requiring a home nurse.
For children who already have primary health insurance through their parents, Medi-Cal can be used as secondary health coverage to help with co-pays, deductibles, and services or equipment that private insurance doesn’t cover.
IHSS
If your child qualifies for Medi-Cal, then In-Home Supportive Services (IHSS) might provide additional services depending on your child’s specific care needs. IHSS can fund in-home care for children who require more care than a typically developing child of the same age. It’s not based on diagnosis but based on need; to determine whether your child is eligible, an IHSS worker will come to your house to evaluate the care your child requires to live safely at home.
California Children’s Services
California Children’s Services (CCS) might be an avenue of support for children whose disability is only physical and so they don’t qualify for Regional Center. CCS typically works with Medi-Cal to help cover the cost of hospital and clinic services, therapies, and equipment. Eligibility is based on diagnosis, and some of the qualifying conditions include hearing and vision impairments. Children with orthopedic impairment, especially if they have certain musculoskeletal conditions, might be eligible for physical and occupational therapy services under the Medical Therapy Program.
In addition to eligibility for CCS being based on diagnosis, CCS has income-based eligibility requirements — unless a child has full-scope Medi-Cal with no share of cost or they have needs met through the Medical Therapy Program. Household income is also not considered if a child needs diagnostic services to confirm they have a CCS-eligible medical condition. Even with these exceptions, funding for durable medical equipment is typically based on household income.
Low-incidence funding
These various public benefits programs rely on a combination of federal and state funding. For low-incidence disabilities, there are some federal funds allocated for equipment to be used in the school setting. Regional Center is a state agency that relies on both state and federal Medicaid funding.
Concoff Kronbeck has this advice for parents when it comes to navigating support for their kids:
There are often community organizations centered around specific diagnoses, so you can find families like yours to turn to for recommendations and support. In addition, Regional Centers often have a family resource center to connect parents with training and other support. Here are some organizations offering free or low-cost support for families of children with low-incidence disabilities:
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