The Hawaii Autism & Disability Roadmap

Under IDEA Part C, every state runs an EI program for children birth through age 2 (services continue until the third birthday). Eligibility does not require a formal diagnosis — documented developmental delays qualify. Family income is irrelevant to EI eligibility. Request an evaluation in writing; the evaluation is free. In Hawaii, the Early Intervention program is administered by Hawaii Early Intervention Section. Visit https://health.hawaii.gov/eis/.

Waitlists for DD-agency services routinely run two to five years in many states. Applying today — even before your child has a diagnosis — starts the clock. Many states allow applications based on a developmental delay or a developmental pediatrician's assessment. In Hawaii, the DD agency is Hawaii DDD (case management units). Apply online at https://health.hawaii.gov/ddd/.

Home and community-based services (HCBS) waivers pay for supports private insurance won't cover: therapies, respite, equipment, and more. Waiver Medicaid is always secondary to private insurance and can cover copays, supplies, and durable medical equipment. Parental income does not disqualify a child from waiver eligibility in most states — the waiver evaluates the child's functional needs. In Hawaii, the primary HCBS waiver is the I/DD Medicaid Waiver. apply at https://health.hawaii.gov/ddd/.

Some states allow Medicaid waivers to pay a parent directly as a paid support person, freeing the family from relying on an outside agency. Availability and rules vary widely. Ask your DD agency or Medicaid office whether this option exists in your state. Ask your Hawaii Medicaid waiver case manager whether parent-as-paid-caregiver is available in your waiver program.

Your IFSP (Individualized Family Service Plan) coordinator is your guide during EI. Connect with your state's Parent Training and Information Center — free coaching and navigation for families of children with disabilities, funded by the federal government.

The law requires the school district to hold a transition conference before your child turns three. Your EI coordinator should initiate this — but confirm it is scheduled. The school district is required to conduct its own educational evaluation at no cost to you.

The Individualized Education Program (IEP) is a legally binding document that specifies your child's goals, services, placement, and accommodations. You are a full member of the IEP team — not a guest. Put all requests in writing and keep copies of everything you submit and receive.

After age three, most state DD agencies require a formal diagnosis of autism or another qualifying condition plus documented functional limitations. If your child now has a diagnosis, re-apply or update your existing application. If you already applied earlier, confirm your application is still active. In Hawaii, the DD agency is Hawaii DDD (case management units). Apply online at https://health.hawaii.gov/ddd/.

Confirm your Medicaid waiver application is active and check for any preschool-age waiver programs your state may offer separately from the main DD waiver. In Hawaii, the primary HCBS waiver is the I/DD Medicaid Waiver. apply at https://health.hawaii.gov/ddd/.

Every year, review your child's present levels of performance, negotiate updated goals, and confirm that services are sufficient. Goals drive services — a service must attach to a provider and an IEP goal. More goals in an area justify more service minutes. Request additional evaluations if you believe needs are not fully captured.

Accommodations help your child access the general curriculum without changing grade-level expectations. See our full checklist for evidence-based options: sensory supports, extended time, visual schedules, assistive technology, and more. Any assistive technology purchased or created for the student qualifies — high tech or low tech.

ABLE (Achieving a Better Life Experience) accounts let eligible individuals with disabilities save up to $18,000 per year (2024 limit) without affecting SSI or Medicaid eligibility. Anyone — family, friends, the individual — can contribute. Funds are used tax-free for qualified disability expenses. Open one early to build the habit.

A special needs trust (also called a supplemental needs trust) holds assets for a person with a disability without disqualifying them from means-tested benefits like SSI and Medicaid. Third-party trusts are funded by family members; first-party trusts hold the individual's own assets. Consult a special needs attorney before you accept any inheritance or settlement on behalf of your child.

As your child grows, their therapy needs shift. Reassess speech/language (including AAC if relevant), OT, social skills, and behavioral supports annually. Community recreation programs — adaptive PE, Special Olympics, theater — build skills and friendships in ways clinical therapy cannot.

Federal law requires a comprehensive re-evaluation at least every three years. You can request one sooner if you believe your child's needs have changed. Request evaluations in writing; the district must evaluate in all areas of suspected disability. A strong evaluation supports stronger services.

If your child receives DD agency supports, request a functional needs re-assessment during the teen years. Support needs often increase as peer activities become more complex. Documenting the gap between your teen's support needs and those of typically-developing peers can increase authorized service hours. In Hawaii, the DD agency is Hawaii DDD (case management units). Apply online at https://health.hawaii.gov/ddd/.

Confirm your Medicaid waiver is still active and review whether your state has any teen-specific programs or transition-age slots opening up. Check whether your child might now qualify for SSI based on their own disability (SSI is evaluated on the child's own disability at any age — income limits apply to the child, not the parent, for SSI purposes up to 18). In Hawaii, the primary HCBS waiver is the I/DD Medicaid Waiver. apply at https://health.hawaii.gov/ddd/.

Federal law requires transition planning to begin in the IEP by age 16 (some states require it by 14). Start the conversation now: What does your teen want to do after school? What work experiences interest them? What living situation do they envision? These conversations shape the Individual Transition Plan (ITP) that becomes part of the IEP.

The ITP is required in the IEP by age 16. It must include measurable post-secondary goals in education/training, employment, and — where appropriate — independent living. It must list the transition services the district will provide. Push for work experiences, job shadows, and community-based instruction — not just classroom learning. In Hawaii, transition planning is required in the IEP by age 16.

At 18, your child becomes a legal adult and you lose automatic decision-making authority. Full guardianship is the most restrictive option — and in many states, courts now prefer less restrictive alternatives. Supported Decision-Making Agreements (SDMAs) let your young adult make their own decisions with support. Limited guardianship covers only specific domains (medical, financial). Consult a special needs attorney at least 6 months before the 18th birthday.

Adult DD-agency services are often a separate application from the childhood system. Many states have separate adult waiver programs with different eligibility rules and — again — multi-year waiting lists. Apply the moment your state allows (often at 16 or 17) to minimize the gap when school ends. In Hawaii, the DD agency is Hawaii DDD (case management units). Apply online at https://health.hawaii.gov/ddd/.

Pediatric providers often cannot serve patients past 21 or even 18. Start identifying adult-system providers now: adult developmental medicine, adult dental with disability experience, adult mental health. Ask for referrals at least a year before the transition.

At 18, Social Security evaluates SSI based on the young adult's own income and assets — parental income no longer counts. Many individuals who did not qualify as children become eligible at 18. SSI usually brings automatic Medicaid enrollment. Apply during the months before the 18th birthday. SSI income (up to the Federal Benefit Rate) does not disqualify from most Medicaid waivers.

Adult waivers often cover a wider range of supports than childhood programs: supported employment, day habilitation, supported living, residential supports. Confirm your young adult is on every available waiting list. If your state has a crisis or emergency slot process, learn the criteria now — don't wait until you are in crisis. In Hawaii, the primary HCBS waiver is the I/DD Medicaid Waiver. apply at https://health.hawaii.gov/ddd/.

When school-based services end (at 21 or 22), adult DD-agency services must be in place to avoid a 'cliff.' Coordinate IEP transition goals with your adult DD agency caseworker. The ITP should explicitly name the adult agency and the services that will continue. Do not assume the handoff happens automatically. In Hawaii, the DD agency is Hawaii DDD (case management units). Apply online at https://health.hawaii.gov/ddd/.

ABLE account: continue contributing and using funds for qualified disability expenses. Special needs trust: fund or update it — include estate planning for parents. SSDI survivor/dependent benefits: if a parent is deceased or disabled, your young adult may qualify for SSDI based on the parent's work record; after 24 months of SSDI, Medicare coverage begins.

Confirm primary care, dental, mental health, and any specialists are adult-system providers who have experience with adults with developmental disabilities. Create a healthcare transition summary document your young adult can bring to new providers.