Resource Hub · Guide
Newly diagnosed with autism. What now?
Take a breath — you are not alone. This plain-language roadmap walks Kentucky families through the first steps, services, and supports that matter most.
Roadmap
Your first steps
First week
- Breathe. A diagnosis doesn't change who your child is — it opens doors to support.
- Ask for the full written evaluation report and diagnosis code (F84.0). You'll need copies for insurance, school and waivers.
- Start a binder or folder: reports, letters, notices, and a contact log with dates.
First month
- Under age 3: refer to Kentucky First Steps (early intervention). Parents can self-refer.
- Age 3+: request a special education evaluation from your school district in writing.
- Call your insurance to ask about autism benefits, ABA, speech, OT and prior-authorization rules.
- Apply for Medicaid waivers now — waiting lists can be years long. Apply even if you're unsure you'll need it.
First 3–6 months
- Start recommended therapies and track progress.
- Check SSI eligibility (for children, based on household income and disability).
- Connect with other families and a parent support group.
- Plan for sleep, safety (wandering/elopement), and routines at home.
Birth to 3
Early intervention: Kentucky First Steps
Early support makes a real difference. First Steps provides evaluations and services like speech, OT, PT and developmental intervention, often in your home. Anyone — including parents — can make a referral, and you don't need a formal diagnosis.
How to start
- Contact your regional First Steps Point of Entry (listed on the Kentucky CHFS website).
- An evaluation is scheduled and, if eligible, an Individualized Family Service Plan (IFSP) is written.
- Around age 2½, ask about transition planning to preschool services through your school district.
Funding
Medicaid waivers & benefits
Waivers can fund supports insurance won't. Many have long waiting lists, so apply as soon as possible.
Michelle P. Waiver (MPW)
For people with intellectual or developmental disabilities who meet ICF/IID level of care. Can fund respite, community living supports, therapies and more. Has a waiting list — apply early.
Supports for Community Living (SCL)
For people with IDD needing more intensive supports. Long waiting list, prioritized by urgency of need.
Home and Community Based (HCB) Waiver
For those meeting nursing-facility level of care; sometimes relevant for children with complex medical needs.
Medicaid & KCHIP
Kentucky Medicaid and KCHIP cover medically necessary autism services, including ABA, for eligible children. Waivers can open Medicaid eligibility based on the child's own needs.
Tip
Care
Therapies to know about
Every autistic person is different. The right mix depends on your child's strengths, needs and what feels right for your family.
Speech-language therapy
Communication, language, social use of language, and feeding in some cases.
Occupational therapy (OT)
Sensory processing, fine motor, self-care and daily living skills.
ABA (Applied Behavior Analysis)
Widely covered by insurance. Look for naturalistic, child-led, assent-based providers and ask how they respect your child's comfort and autonomy.
Physical therapy (PT)
Gross motor skills, coordination, strength and balance.
Developmental & relationship-based (DIR/Floortime, ESDM, JASPER)
Play-based approaches building connection and communication.
Feeding therapy
For restricted eating, sensory food aversions or swallowing concerns.
Mental health & family counseling
Support for siblings, parents and co-occurring anxiety or ADHD.
Coverage
Insurance
- Kentucky law requires many state-regulated health plans to cover autism diagnosis and treatment, including ABA.
- Self-funded employer plans follow different rules — ask HR or your plan for the autism benefit summary.
- Ask about prior authorization, visit limits, and in-network providers before starting.
- If denied, request the reason in writing and ask your provider for a letter of medical necessity.
Education
School & IEPs
- Ages 3–5: preschool special education through your school district (IDEA Part B), including a transition meeting from First Steps before age 3.
- Put every request in writing and date it. Evaluations have legal timelines.
- An IEP provides specialized instruction; a 504 Plan provides accommodations. Know which you're being offered and why.
- You can bring an advocate or support person to any meeting.
Tools
Communication devices, safety & sensory support
- AAC (augmentative & alternative communication): picture boards, speech-generating apps (e.g. Proloquo2Go, TD Snap, LAMP WFL) and dedicated devices — often covered by insurance/Medicaid with an SLP evaluation.
- Safety: door/window alarms, GPS trackers, ID bracelets, safety beds, and registering with local police/911 special-needs programs.
- Sensory tools: noise-reducing headphones, weighted items, visual timers and visual schedules.
- Kentucky Assistive Technology Service (KATS) Network offers device demos and short-term loans so you can try before you buy.
Find care
Find doctors and therapists near you
Search for diagnostic centers, developmental pediatricians and therapy providers across Kentucky.
Map results come from Google and are not endorsements by Beyond Barriers. Always confirm credentials, insurance acceptance and waitlist times.
Kentucky
Helpful Kentucky contacts
Kentucky First Steps
Early intervention for birth to age 3 (evaluation, speech, OT, PT, developmental intervention).
Kentucky Autism Training Center (UofL)
Family education, trainings and resources statewide.
Office for Children with Special Health Care Needs (OCSHCN)
Care coordination and specialty clinics for Kentucky children.
Kentucky Protection & Advocacy
Disability rights help, including school and service denials.
KY-SPIN / Family-to-Family Health Information Center
Parent training on special education and navigating health systems.
Social Security Administration
SSI for children with disabilities in lower-income households.
Taking care of you
- It's normal to feel relief, grief, worry, or all at once.
- Connect with other parents — and autistic adults, whose perspective is invaluable.
- Ask for help and accept it. Respite is a need, not a luxury.
Beyond Barriers Foundation is not an emergency response service
Beyond Barriers Foundation is not an emergency response service. If someone is in immediate danger or experiencing a medical or psychiatric emergency, call 911, or call or text 988 to reach the Suicide & Crisis Lifeline.
This guide is educational and not legal, medical or professional advice. Program rules change — confirm details with the agency involved.