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.
“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.
Some states define low incidence slightly differently from the federal definition. For example, California Education Code 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, with the national average included next to California as an example:
| 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 each state, local education agencies (LEAs) and school districts are responsible for providing programming for kids ages 0–22 who have disabilities, including orthopedic impairment, vision and hearing impairments, and multiple disabilities. (Some states have additional organizations for coordinating these services, such as [Special Education Local Plan Areas, or SELPAs, in California that work together with LEAs.)
Services that a school district could provide to a child with an eligible low-incidence disability include physical, occupational, speech, and behavioral therapy, as well as assistive technology (AT).
Anyone can self-refer for early intervention services. If your child is under age three with potential or diagnosed hearing loss, vision loss, or orthopedic impairment, start by contacting your local school district and asking for a comprehensive assessment. 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. 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.”
For school-age children (preschool and up), school districts 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 school belongs to the district and must eventually be returned, but it is a valuable way for kids with disabilities to access equipment to be used at school.
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 the school district is 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 may be able to qualify for state public benefits programs, such as these programs in California, but it’s rarely straightforward. Concoff Kronbeck says, “It depends on the diagnosis and how significantly the child is impacted.”
Low-incidence funding
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.
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. Many counties 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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