Protect Supports for People with Brain Injury

Medicaid Waiver programs provide specialized services to help people remain in the community. The TBI Waiver program has provided services specifically formatted to help people with the unique challenges associated with brain injury. As part of the ongoing effort to transform the NYS Medicaid system into Managed Care, the Traumatic Brain Injury (TBI) and Nursing Home Transition and Diversion (NHTD) Waivers are slated to move into Managed Care.

Thanks to successful advocacy from this community, this process now includes input from advocates, and the date for this transition has been delayed until April 1, 2018. However, a full transition plan ensuring the safety of participants and the continuation of specialized services has not yet been issued. We are advocating that the transition be delayed unless and until safety and brain injury support services are protected.

BIANYS and many stakeholders in the brain injury community have significant concerns about the transition of individuals with brain injury into the Managed Care System, including:

  • The services developed under the TBI Waiver and extended into the NHTD Waiver were created to meet the specific needs of these communities. Brain injury is a complex issue requiring specialized expertise and knowledge. We must ensure that these services remain available and held to the same or better standards in order to support program participants.
  • Issues with the tool designated to evaluate eligibility for Managed Care Programs, the UAS-NY assessment tool. The Department of Health has acknowledged this issue and provided a method by which participants can receive a second UAS-NY assessment Assurances are needed to ensure that full attention is given to the cognitive and behavioral disabilities of people with brain injury within this assessment tool. Early data indicated that 30% of those currently receiving services under the TBI Waiver were at risk of losing their services based on their UAS-NY Assessment score. We await updated study information to learn what changes have been made to ensure this does not occur.

The brain injury community must speak out to ensure that current and future eligible individuals with brain injury have access to quality brain injury services in the community


Take Action!

Follow the steps below to make your voice heard:
1. Contact the NYS Governor’s office to tell him your experience with brain injury and that he must protect Waiver services. Call the office at 518-474-8390 or use the contact form.

2. Contact Your Assembly member and your NYS Senator by phone, email, or mail, or set up an in-person meeting with them. Tell them how brain injury has touched your life and why these services are necessary.

3. Share this information with other members of the brain injury community, family members, friends, and advocates and encourage them to get involved. Please let BIANYS know about your outreach.

4. Attend Brain Injury Advocacy Day each March.


Further Information on Medicaid Managed Care

New York State is transforming the Medicaid system to a managed care system. Managed Care directs almost all Medicaid spending in the state from fee-for-service Medicaid (under which health services providers bill directly to the state) to “care management”, under which a managed care organization is paid a capitated rate by the state and is then responsible for managing patient care and reimbursing service providers. With a deadline currently in place, Waiver participants, their loved ones, and advocates need to educate themselves on the program and advocate for appropriate services to be provided to individuals with brain injury, who require unique types of assistance.

For information on the Medicaid Waiver Programs, download our Waiver Program Fact Sheet. For additional information on the brain injury services that need protection, download our Services Fact Sheet.

What is Managed Care? Managed care is a term that is used to describe a health insurance plan or health care system that coordinates the provision, quality and cost of care for its enrolled members. Managed Care requires that participants choose a Medicaid health plan to manage all medical services. If you do not choose a plan, the Medicaid Program will choose one for you. It is important to check that the plan covers your services, including doctors and care providers, to ensure that your services can continue. For more information on Managed Care visit New York Medicaid Choice: or New York State Department of Health:

What public information is available? The Department of Health must issue a transition plan to move participants of these programs into Managed Care. They have issued two drafts for public comment so far. After public comment and adjustments by the Department, they must get approval for their plan from CMS. The transition plans released by DOH included response to some issues raised throughout stakeholder meetings and in response to the first transition plan (January 2016). However, there continue to be serious issues and concerns about the plan. The BIANYS responses are available for review: BIANYS 1 2016 Waiver Transition plan response and Response to January 2016 plan.

To adequately address all of the issues involved in this transition, the process of involving community members, providers, professionals, and Waiver participants, must continue with open dialogue. We must ensure that the insights of all of these populations are included as the transition plan and timeline are developed.

BIANYS is committed to ensuring that New York’s Medicaid program continues to be able to serve the special needs of individuals with brain injury, particularly via the specialized services that are provided through the Waiver program. This model of care has the potential to limit access to the level and types of specialized services that participants need to remain living independently in their homes.

Further information on the Uniform Assessment System for New York (UAS-NY) can be found on the UAS-NY page of this site.