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WAMC: Brain Injury Association of New York Rallies at Capitol (w/ Audio)

By Elizabeth Hill, 3/21 (audio in link)

The Brain Injury Association of New York State held a rally at the state capitol in Albany Tuesday.

About 150 supporters of the Brain Injury Association of New York State gathered at the legislature for a day of action, visibility and advocacy. The organization says thousands of New Yorkers suffering from Traumatic Brain Injury are in need of vital services. Eileen Reardon is the group’s Executive Director:

“As we attend meetings, and speak with policymakers today we speak from the heart on the issues and make them recognize the needs of this community. Together we show strength, together we will make a difference, together we are the voice of brain injury,” said Reardon.

Advocates spoke out against Democratic Governor Andrew Cuomo’s budget plan, which includes a proposal to raise the threshold of assessment that qualifies individuals for Medicaid Waiver programs. The Medicaid Waiver Programs allow states to treat certain Medicaid populations at home or in other community-based settings rather than in institutional or long-term care facilities like hospitals or nursing homes. Victoria Clingan, Director of Engagement and Advocacy for BIANYS (Bee-AN-US), says the changes just wouldn’t work.

Budget Update: Medicaid Long-Term Care

It has been becoming increasingly difficult for Medicaid patients needing long-term care – especially home care for extended hours – to get the care they need.  In many areas, there is a shortage of home care aides because low reimbursement rates make recruitment and retention of workers difficult.  State payment rates to managed care plans discourage them from serving high-need patients properly.  The methodology for assessing patient need does not adequately account for cognitive deficiency and other factors.

The newly-enacted state budget legislation (A.3007-B) includes several important actions intended to begin to turn around this siutation.  In addition, the Department of Health (DOH) sent a side letter to the legislature committing to several further actions (indicated below as “Administrative action, side letter”).

  • Consumer Directed Personal Assistance Program (CDPAP) fiscal intermediary authorization: Requires fiscal intermediaries in the CDPAP program to register with DOH (“authorization”), and defines their scope of services.  In 2015, similar legislation was vetoed and this year’s legislation comes from negotiation among the Assembly and Senate Health Committees, DOH, and the fiscal intermediaries.
  • CDPAP wage parity: Adds workers in the CDPAP program to the Medicaid wage parity law that currently applies to other home care workers, primarily in the downstate metropolitan region.  It will phase in to reach full parity in three years. Medicaid payments to managed care plans will cover this, and managed care plans will attest to the wage pass-through in cost reports.
  • Uniform assessment system (UAS):  
  • Adds “cognitive” to the current evaluation of patient “medical, social and environmental needs” required for managed care enrollees. Because of a drafting error, this provision is found in the “revenue” budget bill (A.3009-C, Part GGG) rather than in the “health” budget bill (A.3007-B).
  • DOH will hold regular meetings with legislators, stakeholders, and the UAS program team in order to examine and formulate improvements to the UAS. (Administrative action, see side-letter)
  • High-need rate cells or risk adjustments for managed long term care: (Administrative action, see side-letter.) DOH will work with legislators,  advocates, providers, and managed care organizations to evaluate separate rate cells or risk adjustments for the nursing home, high-cost/high-need home and personal care, and Health and Recovery Plan (HARP) populations.  Resulting adjustments will require approval by the federal Centers for Medicare and Medicaid Services.
  • Delaying TBI/NHTD carve-in to managed care: (Administrative action, see side-letter.) DOH will further delay the carve-in of the Traumatic Brain Injury and Nursing Home Transition and Diversion waivers into managed care from April 1, 2018 to January 1, 2019.
  • Nursing home bed-hold: The legislature restored the bed-hold payments for therapeutic leaves of absence at a 95% payment rate for up to 14 days annually.
  • Nursing home benchmark rates: The transitional “benchmark” Medicaid payment rate for nursing homes patients moving from fee-for-service to managed care will be extended until 2020.
  • Managed Long-Term Care (MLTC) and Adult Day Health Care (ADHC) transportation: (Administrative action, see side-letter.) DOH will not carve-out the Medicaid transportation benefit from MLTC or ADHC programs for the 2017-2018 fiscal year.
  • Spousal and family support: The Legislature protected the resources of family members by rejecting the Governor’s proposal to require them to pay for an individual’s long-term care before the individual could become Medicaid eligible. This was the 28th consecutive year that this has been proposed by five governors and rejected by the Legislature.

WNYT-TV: Brain Injury Patients Rally to Keep Vital Care

See the video here: WNYT News Channel 13

ALBANY – For the first time in its history, the Brain Injury Association of New York rallied at the State Capitol.

The gathering on Wednesday was a final push to convince lawmakers about the need to fund the specialized treatment this group argues, is so vital to their independence and recovery.

The fact that Laura Casellini is here to celebrate her 24th birthday is a milestone that wasn’t assured.

Five years ago the car she was riding in was slammed into by a drunk driver.

Still recovering from a traumatic brain injury, the East Greenbush woman credits the intensive and coordinated services she receives for her recovery.

“I have had a very good recovery,” she noted.

When asked if it would have been as good without the care, she replied, “It would not have been as good. I would have been stuck in a nursing home.”

In New York, services for brain injury patients like Casellini are provided through special waivers. It’s a system of payment and care the governor’s office wants to do away with, transitioning this population to managed care.

“140,000 New Yorkers and of them, 3,000 of them are on traumatic brain injury, TBI waiver,” explained Eileen Reardon, the executive director of the Brain Injury Association of New York State.

Fear about losing services and careful coordination of those services brought the Brain Injury Association of New York State, BIANYS, to the state Capitol for its first ever “Advocacy Day.”

They want to be sure their voices are heard in advance of the April 1 deadline for the state Health Department to release its transition plan.

They’re counting on support from leaders in the state Senate and Assembly.

“However the program is structured, whether it stays outside managed care or moves into it, that the unique, important elements of the TBI waiver are guaranteed in law and protected against tampering,” noted Democratic Assem. Richard Gottfried the Health Committee Chair.

Money to continue the services has been recommended by both the Assembly and Senate Health Committees.

However, anything can happen between now and when the governor presents his budget.

It’s still to be seen what the transition plan looks like when it’s released April 1.

NewsChannel 13’s Benita Zahn will keep you posted.

WNYT: TBI Patients Urge Lawmakers to Keep Medicaid Waiver Programs (video)

By Benita Zahn, 10/8/15 (video at link)

ALBANY – Around 142,000 New Yorkers were treated in emergency rooms for traumatic brain injuries in 2012.

That’s the most recent figure available.

How their ongoing care is paid for is an emotionally charged issue, drawing a large crowd to a hearing in Albany on Thursday.

It surrounds New York’s Medicaid waivers that help people with traumatic brain injuries get care at home.

“And then for the first month of the recovery I couldn’t walk,” Joseph Fisher told lawmakers.

PRESS ADVISORY – 10/8 Brain Injury Services hearing

Patients, Families, Service Providers to Testify at Assembly Hearing on Brain Injury Services

On Thursday, October 8, the Assembly Health Committee and Mental Health and Developmental Disabilities Committee will hold a joint hearing on traumatic brain injury (TBI) services in New York State.  Over 40 witnesses are scheduled to testify, including state Department of Health representatives, patients with brain injuries and their families, service providers, and medical experts.

Every year, brain injuries caused by trauma result in more than 2,000 deaths and 19,000 hospital admissions in New York.  Thousands of New Yorkers live with brain injury and its consequences.  In some cases, symptoms may not even be noticed or considered severe at the time of injury.

New York’s Medicaid “TBI Waiver” program provides Medicaid services for TBI patients in the home.  The state’s plan to transfer all these services into managed care plans has raised concerns among patients, families, health care providers, and legislators about the adequacy and appropriateness of services.  In response, the Department of Health has agreed to delay the scheduled transition until January 1, 2017, and to form a work group to discuss this transition.

Witnesses are expected to speak on topics including the incidence, severity, and consequences of TBI; treatment and service appropriateness and availability, including the rights of patients sent out-of-state; and issues relating to the transition of the TBI Waiver program to managed care.

What:  Public hearing on traumatic brain injury services

Richard N. Gottfried, Health Committee Chair
Aileen M. Gunther, Mental Health & Developmental Disabilities Committee Chair
Other legislators
Patient advocates including self-advocates
NYS Department of Health
Service providers
Medical experts

Legislative Office Building, Hearing Room C, 198 State Street, Albany, NY 12210

When:  Thursday, October 8, 10:30 AM


Public Hearing 10/8: Brain Injury Services

Richard N. Gottfried, Chair
Aileen M. Gunther, Chair
David I. Weprin, Chair


SUBJECT: Traumatic Brain Injury Treatment and Services

Albany, NY
Thursday, October 8
10:30 AM
Legislative Office Building, Hearing Room C

Every year, traumatic brain injury (TBI) (injury to the brain or skull caused by an external force) results in more than 2,000 deaths, 19,000 hospital admissions, and over 100,000 emergency department visits in New York. Thousands of New Yorkers, young and old alike, live with brain injury and its consequences, including complex and unique cases in which symptoms may not have been noticed at first or weren’t considered “traumatic” at the time of injury. While many of these patients receive health care services in nursing homes and other long-term care facilities, it is likely that some portion of individuals are not diagnosed or evaluated for services from which they could benefit. Emerging science on brain injury – its prevalence, causes, and effects – complicates the picture even further.