Starting New York’s Traumatic Brain Injury (TBI) Medicaid Waiver process can feel overwhelming—especially when you’re already managing recovery, appointments, and day-to-day needs at home. The good news is that the process follows a fairly predictable path: an initial referral, eligibility review, an interview/assessment, service coordination, a service plan, and then formal approval before services begin. (Details can vary a bit by region, but the core steps are similar statewide.)
Below are seven practical steps families can use as a roadmap—plus what to prepare so you’re not scrambling mid-process.
Step 1) Confirm basic eligibility and Medicaid status
Before anything else, make sure the person has active Medicaid coverage and fits the waiver’s basic eligibility requirements (for example, the Buffalo-region program summary notes criteria like fee-for-service Medicaid authorization, nursing home level of care supported by assessment, age requirements, and clear medical documentation of a TBI or acquired brain injury).
What to gather early:
- Medicaid information (plan details, ID numbers)
- Proof of age/identity
- Medical documentation related to the brain injury (hospital discharge papers, neurology notes, rehab records)
If you’re unsure whether the Medicaid coverage type is set up correctly for the waiver pathway, ask the program contact or intake staff what they need to see on file.
Step 2) Start with a referral or initial contact to the regional program
In many regions, the process starts with a TBI referral form or an intake referral that can be submitted by the individual or someone helping them. For example, Headway of WNY (the RRDC for Buffalo-region counties) describes beginning with a TBI Referral Form and notes that the more detail you can provide about the injury and current situation, the better.
Tip: When you submit the referral, include reliable contact info for both the applicant and a family member/caregiver who can help coordinate next steps.
Step 3) Expect an initial screening and paperwork (releases + requested info)
After the referral is received, programs typically confirm that Medicaid is active and review basic eligibility factors. In the Buffalo-region example, staff review the referral, confirm the person wants to proceed, and then send initial release forms and a request for helpful information to move the referral forward.
What families can do here:
- Return releases quickly (these allow medical records to be collected)
- Keep a simple folder (paper or digital) for everything you send/receive
- Write down the name and contact info of the program staff member handling intake
Step 4) Complete the interview and required assessments
A key “checkpoint” is an interview and evaluation to determine whether the person can move forward to a full application. In the Buffalo-region outline, an RRDS or nurse evaluator schedules an interview (often via telehealth unless special circumstances apply).
How to prepare (so the interview reflects real life):
- Keep a 1-week log of challenges: fatigue, memory issues, falls/near-falls, medication mix-ups, behavioral changes, supervision needs
- List current supports (family help, therapies, equipment) and gaps
- Be specific about safety risks (wandering, stove use, impulsivity, balance issues)
This is also the time to describe what “a good day” and “a hard day” look like—TBI symptoms can fluctuate, and that matters.
Step 5) Choose a Service Coordinator
If the case is cleared to proceed, the next major step is selecting a Service Coordinator. In the Buffalo-region process description, applicants receive a list of approved Service Coordinator options and the applicant then contacts and contracts with one to develop a service plan.
What to look for in a Service Coordinator:
- Experience with brain injury (not just general long-term care)
- Responsiveness and clear communication
- Comfort coordinating multiple providers and supports
A good coordinator will help translate “needs” into a plan that meets program requirements and fits the home environment.
Step 6) Build the Service Plan (and line up providers)
This is where goals become practical supports: routines, safety strategies, community integration, skill-building, supervision needs, and services that help someone live safely in the community. Importantly, policy guidance indicates that service plans are reviewed by an RRDS and also by a centralized DOH waiver management unit.
What families should contribute:
- Top 3 priorities (safety, independence, caregiver relief, structure)
- Home-specific risks (stairs, bathroom setup, wandering concerns)
- The schedule that actually works (symptom patterns, best times of day)
This is also the moment many families think about ongoing support like TBI care services at home—not as “doing everything for someone,” but as a structured way to reinforce routines, reduce risk, and keep daily life manageable.
Step 7) Review, approval, and start of services
After the service plan is submitted, it goes through review. The Buffalo-region example describes that a person becomes a participant when the service plan is approved and a notice is sent with a start date for services.
What to expect after approval:
- A start date and instructions for next steps
- Ongoing reviews of the plan over time (policy guidance notes periodic review expectations)
- Adjustments if needs change (which is common with TBI)
