This page provides a general overview of six U.S. programs that families of children with developmental disabilities sometimes explore: Early Intervention (birth to age 3), school-based services under IDEA, Supplemental Security Income (SSI), Medicaid, Home and Community-Based Services (HCBS) waivers, and Disabled Adult Child (DAC) benefits.
Each section describes what the program is and how families typically access it. This is an informational overview, not eligibility advice. Specific rules, timelines, income thresholds, and program availability vary by state and change over time — the relevant agency or a benefits counselor can confirm current requirements.
This page describes programs available in the United States only. Families outside the US may have access to different or additional programs through their own country’s systems.
Find Your State’s DD Agency
Select your state to visit your developmental disability agency’s official website.
Links go to official state agency websites and open in a new tab. Links may change over time — if one doesn’t work, search your state name and “developmental disability services.”
Ages 0–3
Early Intervention (Birth to Age 3)
In the United States, infants and toddlers with developmental delays or diagnosed conditions may be eligible for Early Intervention (EI) services under Part C of the Individuals with Disabilities Education Act (IDEA).
Early Intervention services can include:
- developmental therapy
- speech and language therapy
- occupational therapy
- physical therapy
- family support services
How a child becomes eligible for Early Intervention varies by state. Some states allow children with certain diagnosed genetic conditions to qualify based on the diagnosis; others require a developmental evaluation regardless of diagnosis. Your state’s Early Intervention program can explain the pathway that applies in your state.
Under federal guidelines, the evaluation, assessment, and initial Individualized Family Service Plan (IFSP) are generally expected to occur within a defined timeline after referral, though specific timelines and exceptions can vary by state.
Families can typically request an evaluation by contacting their state’s Early Intervention program directly. Under federal guidelines, a doctor’s referral is generally not required to request a referral, and the evaluation itself is generally provided at no cost to families — though states may have their own policies. Your state’s Early Intervention program can confirm how this works where you live.
Ages 3+
School Services (Age 3 and Up)
After age three, children may receive services through their local public school district under IDEA Part B.
Schools evaluate children to determine whether they qualify for services such as:
- special education
- speech therapy
- occupational therapy
- physical therapy
- behavioral supports
Eligibility is typically determined through a comprehensive educational evaluation.
Under federal guidelines, the initial evaluation is generally expected to be completed within 60 days of receiving parental consent, though some states have established different timelines.
If a child qualifies, the school develops an Individualized Education Program (IEP) outlining services, supports, and educational goals.
For a detailed walkthrough of the IEP process and how to advocate effectively in school meetings, see our School & IEP Guide.
Financial assistance
Supplemental Security Income (SSI)
Supplemental Security Income (SSI) is a federal program administered by the Social Security Administration that provides financial assistance to some children with disabilities whose families meet certain income and resource limits.
Eligibility is based on both financial criteria (family income and assets) and medical criteria (the child's level of functional limitation).
When evaluating children, the Social Security Administration considers functioning across six domains:
Acquiring & Using Information
How the child learns, remembers, and uses knowledge
Attending & Completing Tasks
Ability to focus, keep pace, and finish activities
Interacting with Others
Social skills, cooperation, and communication
Moving About & Manipulating Objects
Gross and fine motor skills
Caring for Oneself
Self-care, emotional regulation, and independence
Health & Physical Well-Being
Physical health, medication needs, and effects of treatment
Whether a child qualifies depends on the nature and severity of their functional limitations as evaluated by the Social Security Administration. The SSA uses specific criteria when making these determinations. Some children with SETD5-related disorder may qualify depending on their individual developmental and medical profile.
Families can start the application process through the Social Security Administration at ssa.gov or by calling their local Social Security office. Gathering medical records, evaluation reports, and therapy documentation before applying may be helpful.
Health coverage
Medicaid
Children with disabilities may receive health coverage through Medicaid, which can help cover medical care, therapies, and long-term services.
Children who qualify for SSI may also qualify for Medicaid, though how SSI and Medicaid eligibility connect varies by state.
Some states also offer Medicaid waiver programs that allow children with disabilities to qualify for Medicaid regardless of parental income. Availability and eligibility criteria vary by state.
Some states have pathways, sometimes called Katie Beckett waivers or TEFRA options, that allow children with disabilities to qualify for Medicaid based on the child's own medical needs, even if parental income would otherwise be too high. Your state's Medicaid office or disability agency can explain what options are available.
Community supports
Home and Community-Based Services (HCBS) Waivers
States may provide disability supports through Home and Community-Based Services (HCBS) waiver programs. These programs help fund services that allow individuals with disabilities to live at home or in community settings rather than institutional settings.
Depending on the state, waiver services may include:
- in-home support services
- respite care
- behavioral supports
- personal care assistance
- community integration services
Because these programs are funded at the state level, eligibility criteria and availability vary widely, and some states maintain waiting lists.
Families can often learn about available waivers through their state's developmental disability agency. The Arc is one of the nation's largest advocacy organizations for people with intellectual and developmental disabilities, with chapters across the country. Local chapters may be able to help families understand and navigate the waiver application process, connect to state-specific programs, and access services including housing, employment support, and transition planning — though capacity varies by chapter.
HCBS waiver programs in some states have waiting lists, and wait times can vary significantly. Families who think they may eventually need these services sometimes find it helpful to inquire about waiting lists early, even if services are not needed right away.
Adult benefits
Disabled Adult Child (DAC) Benefits
Some adults with childhood-onset disabilities may qualify for Disabled Adult Child (DAC) benefits through Social Security.
DAC benefits are generally connected to situations where the disability began before age 22 and where a parent has a qualifying Social Security record. The Social Security Administration evaluates several factors when determining eligibility.
Benefit amounts are typically based on the parent's Social Security work record.
When applying for DAC benefits, the Social Security Administration generally looks for documentation showing the disability began before age 22. Keeping records of diagnoses, evaluations, and service history throughout childhood may be helpful when applying for benefits later.
A Note for Families
Every individual with SETD5-related disorder has a unique profile. Eligibility for services depends on many factors, including developmental needs, functional limitations, and local program rules.
Families may find it helpful to speak with:
- early intervention coordinators
- school special education teams
- developmental disability case managers
- Social Security representatives
- healthcare providers familiar with the child's needs
These professionals can help explain available programs and the steps involved in applying for services.
This page is intended as an informational overview of programs that families sometimes explore when seeking support for children with developmental disabilities. Policies, eligibility requirements, and program availability can change over time and may vary by state or country. Families should refer to official program websites or speak with relevant agencies to confirm the most current information.