Category Archives: TBI

Lip Service Advocates

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Even at 57 a deep sadness staggers me when I find myself realizing that the claim some make to being advocates for people with brain injuries is only true when it  makes them look good, gets them attention, and or when they and only they are calling the shots. They are the lip-service advocates, advocates when being advocates is comfortable, risk free.

Real advocates in the world of disability, and I know quite a few, Bruce Darling who heads up the Rochester, New York-based Center for Disability Rights, comes to mind, will tell you advocacy can be scary, lonely, unsettling, heartbreaking, angering, and, at times, joyous. It is, they will tell you, anything but easy. You have to be willing to go into the dysfunction storm, not flee it the moment it appears.

It is, sadly, not unique that there are those who, needing to feel a sense of control in their life, gravitate to the world of disability because large swaths of society’s so-called support systems make those of us who live with a disability controllable. Want those services? Want that wheelchair? Want that assistive technology? Want to come to our conference? Want that subsidy? Be prepared to pay the piper which, in part, will require your willingness to sing our praises, even though we don’t deserve them.

Not a price I’m willing to pay.

 

A Head’s up to NYS Waiver Participants, Providers & Advocacy Groups

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Here is a public notice that all should be aware of:

PUBLIC NOTICE by NYS DOH

The Department of Health is proposing to modify its two 1115 waivers, the Partnership Plan (PP) 11-W-00114/2 and the Federal-State Health Reform Partnership (F-SHRP) 11-W-00234/2, as part of a major redesign of New York State’s Medicaid program. 

Changes affecting the State’s waiver programs are intended to streamline and maximize enrollment
in managed care programs, simplify the program, improve quality of care and reduce costs.
Changes are effective on or after April 1, 2011, as indicated.

 
A. Expand Medicaid Managed Care Enrollment of Non-duals
The State is proposing to amend its federal Social Security Act Section 1115 waivers, the
Partnership Plan (PP) 11-W-00114/2 and the Federal-State Health Reform Partnership (FSHRP) 11-W-00234/2, to expand enrollment in Medicaid managed care programs by requiring some of the populations previously exempt or excluded to enroll in a managed
care organization (MCO).  Enrollment of the new populations will be phased in over three
years beginning July 2011.

 
Beginning 7/1/11, the following individuals will be required to enroll in a
managed care plan:

• Individuals in the Recipient Restriction Program
Beginning 10/1/11, the following individuals will be required to enroll in a
managed care plan:
• Individuals who have a relationship with a primary care provider not
participating in any MCOs
• Individuals living with HIV (outside of New York City)
• Individuals without a choice of primary care provider within 30 miles or 30
minutes
• Non-SSI adults diagnosed as seriously and persistently mentally ill and nonSSI children diagnosed as severely emotionally disturbed
• Individuals temporarily living outside of their home district
• Pregnant women whose prenatal provider does not participate in any MCOs 
• Persons receiving Mental Health Family Care
• Individuals who cannot be served by a managed care provider due to a
language barrier.
Beginning 10/1/11, the following exemption from enrollment will be limited
to 6 months or the completion of a course of treatment, whichever occurs
first:
• Individuals with chronic medical issues under the care of a specialist
provider not participating in any MCOs  
Beginning 4/1/12, the following individuals will be required to enroll in a
managed care plan: Attachment B
• Individuals enrolled in the Long Term Home Health Care Program
(LTHHCP) where capacity exists will have the option to opt out of
Mainstream Managed Care and enroll in the Managed Long Term Care
program
• Individuals with characteristics and needs similar to those in the LTHHCP
• Individuals with end stage renal disease
• Individuals receiving services through the Chronic Illness Demonstration
Program
• Homeless persons
• Infants under 6 months of age who were born weighing under 1200 grams or
are disabled 
• Adolescents admitted to Residential Rehabilitation Services for Youth
(RRSY) programs
Beginning 10/1/12
• Residents of residential health care facilities (nursing homes) 
Beginning 4/1/13, the following individuals will be required to enroll in a
managed care plan providing program features are in place:
• Residents of an intermediate care facility for the mentally retarded or
developmentally disabled (ICF/MR or ICF/DD)
• Individuals with characteristics and needs similar to residents of an ICF/MR
• Individuals receiving services through the Nursing Home Diversion and
Transition waiver
• Residents of Long Term Chemical Dependence programs
• Children enrolled in the Bridges to Health (B2H) foster care waiver program
• Non-institutionalized foster care children living in the community
• Individuals receiving services through a Medicaid Home and Communitybased Services Waiver (these individuals may enroll while remaining in the
waiver program)
• Individuals with characteristics and needs similar to those receiving services
through a Medicaid Home and Community-based Services waiver 
• Individuals receiving services through a Medicaid Model Waiver waiver
(Care at Home) Program (these individuals may enroll while remaining in the
waiver program)
• Individuals with characteristics and needs similar to those receiving services
through a Medicaid Model Waiver (Care at Home) Program
• Individuals eligible through the Medicaid Buy-In for the Working Disabled
(those who pay a premium and those who pay no premium)
• Residents of State-operated psychiatric centers
• Blind or disabled children living separate and apart from their parents for 30
days or more
• Institutional foster care children

B. Streamline the Enrollment Process Attachment B

Effective on or after 10/1/2011, the State proposes to streamline the enrollment process by
standardizing the period during which all beneficiaries may select a plan.  New applicants
will be required to indicate their choice of plan at the time of application for Medical
Assistance (MA), and if they do not choose a plan, they will be auto-assigned to a plan
using the existing process.  Persons already in receipt of MA will have 30 days from the
day the local district or State indicates to choose a plan.  If they do not choose a plan
within that 30 day window, they will be auto-assigned to a plan.  Pregnant women will be
required to choose a plan when they apply for presumptive eligibility and will be autoassigned after 30 days if they fail to do so.

 
C.  Pharmacy “Carve-in” and Other Benefit Changes

Effective on or after 10/1/2011, pharmacy services will be included in the Medicaid
managed care and FHPlus benefit packages.  For Medicaid managed care only, personal
care agency services will become the responsibility of Medicaid managed care plans
effective 7/1/2011, and effective 10/1/2012, nursing facility care will be included in the
benefit package.  

D.  Mandatory Enrollment of Medicaid Eligibles in Managed Long Term Care

Effective April 1, 2012

the State will require the transition and enrollment of people who
meet the following criteria into Managed Long Term Care (MLTC) plans or other care
coordination models approved by the Commissioner of Health: age 21 and older; eligible
for Medicare and Medicaid; and, in need of community-based long term care services for
more than 120 days.  Non-dually eligible disabled adults who meet these criteria will have
the option of joining a MLTCP in lieu of an MMC plan.  Three MLTC models now
operate in New York – the Program of All-Inclusive Care for the Elderly (PACE),
Medicaid Advantage Plus (MAP) and partially-capitated plans.  Partially capitated plans
are expected to be the primary type of plan these individuals will enroll in because there is
no requirement for concurrent Medicare enrollment.  However, where available and when
additional plan-specific enrollment criteria are met, people will have an option to select
PACE or MAP as well. 

Mandatory enrollment will begin in New York City and be phased-in throughout the rest
of the State as plan capacity is developed.  People who are in the Assisted Living Program,
Nursing Home Transition and Diversion waiver, Traumatic Brain Injury waiver and those
served through the Office People with Developmental Disabilities would be exempted
from mandatory enrollment in a MLTC program until the State develops appropriate
program features for these populations.

 
Additional information concerning the Partnership Plan and the proposal can be obtained
by writing to: 

  New York State Department of Health
  Division of Managed Care
  Bureau of Program Planning and Implementation Attachment B
  Empire State Plaza
  Corning Tower, Rm. 1927
  Albany, New York 12237

1115 waiver information is also available to the public on–line at http://www.nyhealth.gov
Written comments concerning extension of the program will be accepted at the above
address for a period of thirty (30) days from the date of this notice.

NYS Department of Health: Keep’m in the dark

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Murphy scoops a spoonful of sugar into his coffee and nudges the sugar bowl in Wrench’s direction. “So how do you think the conversation goes?” he asks.

“What conversation?” Wrench puts the lid on the sugar bowl and smiles. Since his accident Murphy’s memory gives him a hard time and he still doesn’t remember Wrench doesn’t take sugar, with anything for that matter.

“The DOH table, they’re in a meeting and whattaya think they say? You’d think they’d want to at least make an effort in acting like they give a damn about us.”

Wrench laughs. “Hard to imagine how they think they’re successful there. I mean, so they sit back and say, Okay, first thing we do is make sure these TBI people, like that’s all we are, have as little chance as possible in the fair hearings and the we keep using that form, what they call it?”

Sarah lifts her head from the pad she’s been doodling on. “PRI. It’s called a PRI. Patient Review Instrument. That’s how they assess us to see if we’d be in nursing homes without the waiver.”

“PRI,” Murphy says, eyes closed, trying to make it a memory. “The thing doesn’t address cognitive stuff at all.”

Sarah again. “That’s the idea. People been after’m for years to come up with another assessment form that really applies to brain injury and they don’t.”

Murphy, “You think they’re that stupid?”

“Like a snake stupid, they are. Long as they can use a bullshit tool the doesn’t apply to brain injury the more they can deny help to survivors and the more people they can throw off the waiver.” Wrench sips his black coffee.

“And then this latest thing they’re pulling.” Sarah leans back in her wheelchair and looks out the window. It’s begun to rain. “Now they’re dumping the mailing list they used to have to keep people informed of the meetings of that brain injury council.”

“Not to mention minutes and agendas,” Murphy adds.

“Keep the public in the dark, that’s the DOH motto,” Wrench says.

Sarah finishes drawing a straw hat a young boy that looks remarkably like Huckleberry Finn. “Maybe what we do is find out where they live –”

“Shit, they know where we live.”

“We get a bunch of us together, show up at their houses, bring cameras and recorders and some megaphones, and ask’m what’s up.”

“They’ll call the cops.”

Sarah smiles. “Good. Then the press will do something and won’t that be nice.”

“One thing,” Wrench says. “If we do this, we send out an email to everybody we know’n we make sure DOH ain’t on the email list.”

“Keep’m in the dark.”

A Renegade NYS Agency

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There are, as you might guess,  state and private agencies who put great effort  into convincing the public at large that they truly care about the people they serve and are working very very hard to meet their needs. Peel back a  few layers of public-relations spin and you will oftentimes find nothing could be further than the truth. Too often the motive is to look rather than do good, and raise a little money while you’re at it.

A few people I work closely with are beginning to look deeper into the activities of a non-profit agency. As those of you who read this blog already know, the NYS Department of Health is a problem in nearly every sense of the word when it comes to the lives of brain injury survivors in the state. However, in fairness to the DOH, it does not fall into the category of an agency who tries to look good. It makes little to look good at all because it is hard to determine who is actually holding them accountable. They are an arrogant renegade state agency if their ever was one. The way they treated the TBISCC (Traumatic Brain Injury Services Coordinating Council) earlier this month reeks of arrogance.

The TBISCC, to its credit, has asked the DOH to speak on the problems with Medicaid Fair Hearings being faced by brain injury survivors on the state’s TBIU Waiver because the DOH last year gave a verbal directive blocking their case managers from advocating for them at the hearings. The day before the TBISCC’s meeting on April 14, the DOH notified TBISCC Chair Michael Kaplen that no one would be available to discuss the matter.

Now, this writer and others wrote to the DOH’s  Cheryl Veith asking her to put us on a several years old email-list that tells the public when the TBISCC is having its public meetings and sends out agendas and minutes when they become available. Apparently the DOH has decided the mailing list was too friendly. Ms. Veith responded with “We have recently implemented a process whereby announcement of scheduled TBICC meetings, minutes of the last meeting, and a draft agenda for the next scheduled meeting will be posted for the public to view on the Department of Health website at: www.nyhealth.gov/events/meetings/index.htm.”

Some who live with brain injuries live with memory deficits, processing challenges, and more. Wading through a website can be tantamount to climbing Mt. Everest without oxygen.  This fact has been shared with Ms. Veith and other DOH officials like Deputy Commissioner Mark Kissinger, Mary Ann Anglin, Lydia Kosinski and Carla Williams, all of whom will do their level best to convince anyone who crosses their path that they really really really care about brain injury survivors. So far, a large number of survivors and their families and healthcare professionals who work hard to help us think that’s bunk.

Reinstating the email list is, to use a phrase right out of the ADA, a reasonable accommodation for those of us who live with brain injuries. I doubt they will reinstate it   because for some time now there are two words no one links to the NYS DOH: reasonable and accommodating.

NYS DOH Evasiveness, the BI Council & Unpaid Providers–Part II

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NYS Department of Health numbers released at last week’s meeting of the TBISCC (Traumatic Brain Injury Services Coordinating Council) reveal that TBI Waiver providers across the state may not be getting paid for nearly 11 percent of those individuals on the waiver. The DOH figures for March reveal that while there were 2,839 people were on the waiver, only 2,527 were billed for and 312, or 10.98 percent to be precise, were not.

In every region in the state it appears waiver providers are doing significantly more work than they are getting paid for, a fact the DOH was and is quick to blame on anyone but the DOH.  Some of the numbers are staggering. In New York City it seems providers are not getting paid for nearly 22 percent of those on the waiver with 374 enrolled and only 293 getting billed for. In Long Island providers were not paid for 14.2 percent of their waiver participants and in the Binghamton/Southern Tier region they were not paid for 12.29 percent.

While TBISCC chair Michael Kaplen pressed DOH officials at the meeting for an explanation of the numbers’ discrepancies, both Kaplen and DOH Official Maribeth Gnozzio speculated that the reasons for the discrepancies in the numbers may the responsibility of anyone but the DOH itself.  Gnozzio was more generous with her finger pointing, placing the reason for the discrepancies at nearly everyone’s feet but the DOH’s. She blamed the counties, delays in billing, lapses in service coordination, and fair hearings. Kaplen, on the other hand, speculated that the reasons may some are on the waiver who don’t need to be and others may not getting waver services. However, Kaplen made it clear the issues was a significant one when he said, “This is a huge number to go unaccounted for.”

Kaplen said, “If you have a discrepancy, and I’m just going to use Syracuse (with) approximately 40 individuals (that providers have not been paid for), it means… it could mean that some of these individuals don’t need services and that’s why there’s no billing and they really should be examined to determine whether or not they need to be on the waiver. It’s also possible being that some of these individuals need services and are not getting services and that’s why there’s no billing taking place. But I think there would be important to look at both of those items.”

This writer can tell you that he cannot remember single instance of a provider refusing to give services to a survivor. Moreover, both Gnozzio and Kaplen failed to mention what may well be the primary reason for the differences in the enrollment and billing numbers. When CMS (Centers for Medicare & Medicaid Services) recently audited the state’s waiver, they made it clear that providers could not bill until the received signed approval in the form of an NOD (Notice of Decision) from the DOH. Sources from around the state make it clear the DOH is often slow off the mark in signing NODs and some, including this writer, think at times this may be by design. Providers are only allowed to back-bill 90 days. So, if the NOD takes four to five months to get signed by the DOH, the providers lose one to two months of revenue they’ve truly earned.

The following are the regional numbers provided in the chart provided to the TBISCC by the DOH:

Syracuse: 321 enrolled, 287 billed for.

Rochester: 492 enrolled, 463 billed for.

NYC: 374 enrolled, 293 billed for.

Lower Hudson Valley: 236 enrolled, 212 billed for.

Long Island: 246 enrolled, 211 billed for.

Capital District: 356 enrolled, 324 billed for.

Buffalo: 273 enrolled, 257 billed for.

Binghamton/Southern Tier: 301 enrolled, 264 billed for.

Adirondack: 240 enrolled, 216 billed for.