Brain injuries affect at least 2.5 million children and adults in the U.S. each year. Any brain injury, regardless of severity, can change the way a person thinks, acts, moves and feels. Even so-called “mild” injuries can have devastating consequences that require intensive treatment and long-term care. New Yorkers with brain injuries face many problems on their journey to recovery, often falling through the cracks of the health care system when their injuries are misdiagnosed and misunderstood.
BIANYS advocates for brain injury survivors so that everyone has access to the services they need and deserve. In a year that has been like no other, New Yorks’s brain injury community needs attention. These are our priorities for 2021:
Continuum of Care for People with a Traumatic Brain Injury
New Yorkers with brain injuries deserve to get the help they need from the time of their injury to the time they integrate back into their community. So many brain injury survivors and their families are left to their own devices to make decisions on continuing services and care taking requirements. BIANYS proposes a plan that details four recommendations to address the needs of the brain injury survivor as they make this transition:
- Enhance public knowledge of traumatic brain injuries and their impacts
- Improve access to community-based services
- Provide service coordination for non-Waiver participants
- Enhance TBI provider training to improve diagnosis and treatment
These four recommendations will be achieved through:
Prevention and Outreach: Create a statewide outreach and education campaign focused on connecting New Yorkers with brain injuries to the resources they need.
Treatment and Rehabilitation: Create a care management program that fosters a community of excellence amongst health care providers.
Support Services: Make sure people with brain injuries return to the least restrictive setting in their communities and give them the care management services that will keep them there.
Pass [A2564(Fall)/S1074 (Hoylman)] to Update school concussion management and response protocols and increases concussion data collection and reporting
The 2011 Concussion Management Awareness Act should be updated to focus on identifying and implementing paths to achieve a successful return to education for all New York students that have sustained a concussion. These changes will address the current disparate nature of brain injury services and strengthen advisory and coordination channels. Proposed changes include:
- Expand the Concussion Management and Awareness Act to apply to non-public schools and competitive/travel youth sports.
- Mandate Concussion Management Teams in all school districts.
- Require academic Return-to-Learn policies such as having a student return to a full class schedule without academic adjustments or accommodations.
- Require one hour of continuing medical education to be completed on an annual basis by all medical directors, physicians, nurse practitioners, and physician assistants employed by a school or school district.
- Recommendation for schools to retain access to an Athletic Trainer to provide services to students.
- Identify and report annually the number of concussions that occur each year to applicable district superintendent or chief school officer, board of education or governing body.
BIANYS works on many issues that confront the brain injury community daily. In addition to the above priorities, we are working on the following issues:
TBI Waiver Outside of Managed Care Programs [A192 (Gottfried)/S1577 (Rivera)]: The current transition plan could dramatically reduce the individualized, coordinated services that address physical, cognitive and behavioral issues and help people with brain injury remain safely in the community. Changes are set to go into effect on January 2022. A192 (Gottfried)/S1577 (Rivera) will make the current carve out permanent.
TBI Trust Fund [A1003 (Cahill)]: The Brain Injury Trust Fund would be the payer of last resort for New Yorkers with brain injury, providing a financial safety net to assure improved access to needed services. In addition, BIANYS proposes that funds be utilized for a public information campaign detailing information and resources about brain injury.
Provide Additional Services in Rural Areas [A124 (Gottfried)]: This legislation would provide authority for programs serving developmentally disabled individuals to provide services to those with TBI when there is limited service capacity and provided the programming is appropriate.
Uniform Assessment System (UAS-NY): New York State has implemented the Uniform Assessment System – New York (UAS-NY) for all Medicaid programs. This tool is used to evaluate the level of care for people receiving certain services, but does not fully assess cognitive disabilities, which impacts New Yorkers with brain injury to a greater extent than individuals with other disabilities. Medicaid must use a tool that can be used to evaluate the needs of New Yorkers with cognitive disabilities so they can have access to the critical services they need to remain in the community.
Bring New Yorkers Home: There are many New Yorkers with brain injury institutionalized in out-of-state facilities due to a lack of adequate community-based resources at home. It is imperative that service networks be developed across the state to provide the support needed to assist these New Yorkers in their home communities. We are working with the Legislature to present solutions on how the current service delivery system can be expanded to return New Yorkers to their homes.
BIANYS is also working with Legislators and decision makers to find solutions to community housing issues and to increase services for all New Yorkers with brain injuries. Services and issues include independent living skills training and development, structured day programs, substance abuse programs, intensive behavioral programs, community integration counseling, and environmental modifications.
For a pdf verison of the 2021 Legislative Priorities, click here.
Join with us in working for change! Contact your representatives in the NYS Senate and the NYS Assembly and tell them why brain injury matters. Become a BIANYS member today and visit our Advocacy Tools page to learn how to take part in our efforts!