Exposing NYS’s Brain Injury Patterns

There is real truth to the notion that much of advocacy consists of bringing things into the open. Things must be brought into the open. Why? Because we are talking about equal rights and some of the primary fuels for preventing equal rights are secrecy, intimidation and the need some have to be in control.

When it comes to brain injury, New York is not suffering from a lack of controlling individuals, secrecy, and intimidation. Hell, it seems to thrive on it. The only ones that don’t thrive on it are those who live with brain injuries, their loved ones, and the service providers in the state who really do give a damn.

There are quite a few groups in the state who publicly claim to care: the New York State Department of Health, the TBISCC (Traumatic Brain Injury Services Coordinating Council), the Brain Injury Association of New York State, and the Provider’s Alliance, to name four. It’s easy to say you care. It’s now time to match word with deed with relentless tenacity.

The Providers Alliance is comprised of about 40 to 50 companies who provide services for the state’s Traumatic Brain Injury Waiver; most of the providers in this group are very good.

The DOH is the bully on the block. In addition, they are about as secretive and insular as it gets. They are a rather poisonous presence at the moment.

I’ve had a long relationship with the Brain Injury Association and like any lengthy relationship it’s had its ups and downs. While they say they are “a statewide non-profit membership organization that advocates on behalf of individuals with brain injury and their families,” their dead silence on several issues, most recently the DOH directive to block service coordinators from siding with their clients at Medicaid Fair Hearings, is deeply disturbing. 

In a letter from the TBISCC to providers, survivors, and interested parties, the council said they were “formed by (an) act of the New York State Legislature to advise the Department of Health regarding service needs of persons who have sustained a traumatic brain injury.” One question is how many proposals and suggestions has the council presented and how has the DOH responded?  If the council holds the DOH accountable and does so publicly, I mean really publicly, they can be a force to be reckoned with.

Stay tuned…

 

 

It’s good to be alive

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Rhythm moving moments remembering soft

Sweet tongues in sweet wood rhythm

It’s good to be alive

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Shifting sound breathes flesh to flesh

Memory deep in glistening time

It’s good to be alive

*

The curling bend of a guitar note

Glistens a tear to my eye

It’s good to be alive

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Your voice calling across the nighttime sky

To me crying standing up again

It’s good to be alive

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Come tomorrow’s daylight rising

I’m my father’s son I am always

It’s good to be alive

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Lip Service Advocates

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

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.

My Mothers’ Day

They both died at 68, one by her own hand, the other, cancer. Both gone too soon as far as I’m concerned and both were in the light of reality, my mother.

One of the things you learn as a child who has been adopted is this; blood may be thicker than water but family is thicker than blood. One of the phrases all adoptees I know truly hate is, “Well who are your real parents?”  Hell, I’ve known mothers and fathers who are anything but loving and kind to their genetic progeny. In fact, some of the most brutal experiences some children have gone through were inflicted by one or both of their parents. Like I said, blood may be thicker than water but family is thicker than blood.

Frankly, I only use the term adoptive mother and birth mother so the listener or reader can tell who I am talking about. In my heart, there are no qualifiers, they are both my mother. There is my mother Virginia who raised me and my mother Leona who surrendered me for adoption for reasons not of her making I would learn when we were reunited on January 8, 1987.

Like any human being, neither was perfect, but both loved me and from both I learned and gained an enormous amount. Both were instinctively supportive of equal rights for everyone and both were deeply empathetic to the underdog, the castaway, the persecuted. Both were fiercely supportive of my advocacy instincts. In fact, for years my mother Virginia was my number one confidant when it came to things like fighting for the Brady Bill and against the death penalty, when it came to fighting for Gay rights and disability rights and against things like anti-Semitism. 

My mother Leona was, without question, my emotional and spiritual familiar. Time with her allowed me to learn a lot about where who I am came from. To this day she is one of the most emotionally and physically courageous human beings I have ever known.

My mother Virginia ended her life August 12, 1992 and my mother Leona died of cancer on December 19, 2001.

I can tell you that I love both my mothers with all my heart and I miss them both – with all my heart.

I love them my whole wide world and then some.