NYAPRS Note: Following is NYAPRS testimony at yesterday’s NYSlegislative mental hygiene budget hearing, updated to include the open
access to medications of choice priority our members have identified.
Key themes for our legislative advocacy include:
* Services in the most Integrated Setting/Olmstead
o Support for OMH budget initiatives moving people and public dollars
from hospital, nursing and adult homes to supported housing and from
sheltered workshops to supported employment, for an enhanced NYNY III
housing program for currently homeless individuals and for an expanded
NYS-based Ticket to Work program
o Support for the Governor’s commitment to an accelerated timeframe to
craft a data-driven state Olmstead Plan
* Reinvestment and Recovery
o Support for reinvestment of savings from reductions in use of state
psychiatric centers and Medicaid hospital and ERs into housing, peer
services and employment supports
o Support for hope and recovery based ‘First Break’ initiatives
* Readiness for Reforms
o Call for more in the way of enhanced education and advocacy supports
for millions of New Yorkers poised to be enrolled in health homes and
managed care plans; support for $3 million more for Medicaid managed
care enrollment brokers in the budget
o Support for $6 million in budget to help behavioral health providers
adapt to electronic healthcare records-based environment
* Rights and Choice Protections
o Continued support for voluntary outreach/engagement and supports and
opposition to involuntary outpatient commitment
o Support for person-centered state hospital discharge planning
o Support for open access to medications of choice and prescriber
prevails patient protections
Testimony Before the NYS Legislative
Joint Fiscal Committees
Mental Hygiene Budget Hearing
February 14, 2012
Presented by
Harvey Rosenthal Executive Director
New York Association of Psychiatric Rehabilitation Services
On Behalf of NYAPRS Members and
The NYAPRS Public Policy Committee
Co-Chairs: Ray Schwartz, Carla Rabinowitz
NYAPRS Board of Directors
President Douglas Hovey
www.nyaprs.org
I’d like to thank the chairs and members of the mental hygiene and
finance committees for this opportunity to present to you the concerns
of the thousands of New Yorkers represented by the New York Association
of Psychiatric Rehabilitation Services. NYAPRS is a unique statewide
partnership of New Yorkers with psychiatric disabilities and the
community mental health professionals who support them in over 100
community-based mental health agencies from every corner of the state.
I’m Harvey Rosenthal, NYAPRS Executive Director. The following testimony
that I will present incorporates the direct input of many hundreds of
NYAPRS members who gathered at local forums that were conducted this
past fall and winter in localities across the state including Watertown,
Buffalo, Rochester, Syracuse, Owego, White Plains, Newburgh, Lake
Placid, Amityville and Brooklyn.
You may have seen our members out in great evidence on January 31.
Throughout that day, the Capitol was filled with over 800 spirited
mental health self and system advocates who came to urge their state
legislators and Administration officials to advance policies promoting
their recovery, rehabilitation and rights. I’ve attached some examples
of media coverage of those efforts below.
State mental health policy is a very personal matter for our NYAPRS
community. Many of our members, our board members, our staff and I all
share a common personal journey of recovery from a psychiatric
disability. We believe this strengthens our ability to speak to you on
behalf of the thousands of New Yorkers with psychiatric disabilities and
their supporters that we represent.
Our community greets this year’s Executive budget and MRT proposals with
the following reactions and recommendations.
First off, I’d like to extend our great thanks to the Administration and
the Department of Health for extending to us a number of important
opportunities to be heard on a broad range of issues associated with the
Medicaid Redesign Team’s considerations.
This process gave me the honor to serve as a member of the Medicaid
Redesign Team and on the MRT’s Behavioral Health and Affordable Housing
Work Groups, along with sub groups on pharmacy, health homes and peer
run services.
I also want to extend our community’s great thanks to Governor Cuomo,
who in his State of the State message emphasized his commitment to see
that “people with disabilities have (the) right to receive care in the
most integrated setting appropriate to their needs,” committing our
state to “provide access to affordable and accessible housing, and
promote employment of persons with disabilities.”
Serve New Yorkers with Psychiatric Disabilities
in the Most Integrated Community Setting
Background
NYAPRS members are passionately committed to advancing policies that
ensure that people with psychiatric and other disabilities are fully
afforded their rights to live and work in the most integrated community
setting, in keeping with the Americans with Disabilities Act and the
Supreme Court’s Olmstead decision. Accordingly, we strongly support the
following:
Housing
NYAPRS members view affordable community based housing as an essential
human need that is strongly tied to good health and reduced
institutional costs.
Accordingly, NYAPRS members strongly support Executive budget proposals
to:
* create a Supported Housing Reinvestment fund from Medicaid
savings from hospital and nursing home closures or bed de-certifications
to expand supportive housing and related services, explicitly including
peer support and employment services.
* 3-year commitments to create 1,000 supported housing units for
residents of nursing homes ($10 million this year) and 3,400 beds for
the NY-NY III program.
* In addition, NYS should establish a 10% set-aside program for
high-need individuals with disabilities.
Bringing Justice to Adult Home Residents and State Hospital Residents
A federal court found NYS in violation of Olmstead and the ADA in the
segregation of 4,300 NYC residents with psychiatric disabilities in
adult homes, which it considered “segregated institutional settings that
impede integration in the community and foster learned helplessness.”
The state has appealed that ruling. NYAPRS strongly feels that NYS must
no longer delay meeting its responsibility to provide the supports
necessary to help adult home residents with psychiatric disabilities to
move into the community. Accordingly, we strongly support the Executive
budget proposal to fund:
* 5,100 supported housing beds over the next 3 years to deal with
“emerging needs”, including $16.8 million for adult home residents named
in the lawsuit.
Expand Employment Options and Services
NYAPRS members strongly support the Governor’s and OMH’s proposal to
* expand the Ticket to Work program to boost federal employment
funding incentives and reimbursements for services that successfully
help New Yorkers with disabilities to return to the work force.
* support individuals to move from segregated outmoded sheltered
workshops to employment focused Personalized Recovery Oriented Services.
Develop a NYS Olmstead Plan
NYAPRS members enthusiastically welcome Governor Cuomo’s commitment to
* “develop an Olmstead Implementation Plan that will guide the
transition of individuals from institutional to community-based care,
provide access to affordable and accessible housing, and promote
employment of persons with disabilities”. Such a plan must set
measurable targets and dates by which public dollars and people with
disabilities are supported to move from segregated to identified most
integrated settings.
* re-energize and re-focus the state’s Most Integrated Setting
Coordinating Council.
Reinvest Savings from State Hospital Downsizing
Person-Centered State Hospital Discharge Planning
Background
Too many hospitals for too much money: New York State currently operates
27 state psychiatric hospitals (almost 7 times the national average),
houses fewer individuals per campus than other similar states (most
states house similar amounts in 5-7 facilities) and topped the nation in
cost (our $1.2 billion comes in at more than the combined total of other
top states Pennsylvania and New Jersey.
Olmstead Requirements: In this year’s state of the state address,
Governor Cuomo emphasized the state’s commitment to “develop an Olmstead
Implementation Plan that will guide the transition of individuals from
institutional to community-based care, provide access to affordable and
accessible housing, and promote employment of persons with
disabilities”. Such a plan must set measurable targets and dates by
which public dollars and people with disabilities are supported to move
from segregated facilities, like state psychiatric centers and adult
homes, to identified most integrated settings.
Reinvestment: In 1994, the NYS Legislature passed the Community
Reinvestment Act which authorized the closure of 5 state hospitals and
reinvested a portion of the savings into creating an estimated $200
million of community recovery services.
In succeeding years, the legislature has suspended the requirement to
reinvest savings from closing additional hospital wards and used those
funds for deficit reduction.
In 2007, the state closed Middletown Psychiatric Center and reinvested
about $7 million into boosting services in the surrounding counties.
In 2011, the state authorized the closure of Hudson River Psychiatric
Center and has committed several million dollars to surrounding county
mental health systems.
In the proposed 2012-3 budget, the state proposes to close Kingsboro PC
and several more wards without a definitive reinvestment formula.
Recommendations: The NYS Legislature should restore the original
Community Reinvestment Act’s formula and requirement to reinvest a
portion of savings from state hospital downsizing/closure to boost local
community recovery services. This requires eliminating the
‘notwithstanding’ language in the Executive proposal.
Person-Centered State Hospital Discharge Planning
Background: NYAPRS members share strong concerns about the pace and the
quality and continuity of transitional and community care afforded to
residents of closing state hospital facilities and wards.
Recommendations: NYAPRS members strongly believe recovery in the
community should be expected and offered to all, including those we have
traditionally institutionalized in the largest and costliest state
hospital system in the country. To ensure that proposed closures and
downsizing of that system are done properly, we call for a process that
ensures:
* Person-driven community recovery and service plans with
sufficient time to put individualized supports in place prior to
discharge
* Substantive use of peer supports, including peer bridgers, warm
lines, crisis respite programs
* A transition team from each community being affected by the
closure will meet to design a strategic plan in preparation for the
closure
* Behavioral Health Organizations and Health Homes will be active
members in the transition and will prioritize services for individuals
* Tracking of post-discharge Medicaid and non-Medicaid
reimbursable services and recovery outcomes as outlined in the discharge
plan
Reinvest Medicaid Inpatient and ER Savings
to Expand Housing, Peer Support and Employment Services
Governor Cuomo’s 2012-3 budget continues to substantively re-shape our
health and mental healthcare systems in ways that are intended to
improve care coordination and integration and maximize alternatives to
Medicaid hospital and emergency room care through the use of Behavioral
Health Organizations, health homes and, starting next year, the
integration of service dollars and services for New Yorkers with serious
mental health and substance use conditions from the current fee for
service carve out into a fully capitated Medicaid managed care program.
While NYAPRS members strongly support these approaches, we believe that
they will succeed only if the state dramatically expands the amount and
array of community wellness, prevention and support systems on which New
Yorkers with serious medical and behavioral health conditions will rely.
Otherwise, we will only be repeating the deinstitutionalization failures
of the past where we closed the door to hospitals and ERs without
placing sufficient services and supports in the community.
SIMPLY IMPROVING PEOPLES’ CONNECTION TO MEDICAL SERVICES AND MEDICATIONS
WILL NOT BE ENOUGH!
There is substantial data showing that addressing housing and economic
instability and social isolation are needed and can produce striking
results in reducing avoidable relapse rates and costly ER and hospital
visits.
* A 2002 University of Pennsylvania study found supported housing
produced an average of $16,282 in savings from reduced use of hospitals,
ERs, shelters et al.
* A 2010 study by OptumHealth found that peer bridger
hospital-to-community support services reduced Medicaid hospital days by
73% in Tennessee, 44.1% in Wisconsin
* A May 2006 Mathematica study found that working Medicaid
beneficiaries dropped their Medicaid dollar utilization by 40%
NYAPRS members strongly agree with the findings of the Governor’s
Medicaid Redesign Team, which concluded that “savings from better
managed behavioral and physical health care should be reinvested to the
extent possible for improved outcomes and reduced health costs.
Reinvestment should prioritize non-clinical support services, such as
housing, peer, employment, and family services.”
This would build on successful models that moved public mental health
services to managed care and required plans to reinvest savings into
community like neighboring Pennsylvania, where one plan created $60
million of supported housing.
Accordingly, we urge the Legislature to:
* Expand the ‘Supportive Housing Development Reinvestment Program’
and extend discretionary reinvestment authority to OMH to include local
peer support and employment services.
* Ensure that, as New York heads for 2013 implementation of fully
capitated Medicaid managed care systems, all proposals and contracts are
written to explicitly require reinvestment of state and plan savings
into local housing, peer support and employment services.
Support for Other Reinvestment Initiatives
NYAPRS members also strongly support a range of innovative initiatives
in the Executive Budget proposal including:
* Innovative ‘First Break’ Initiatives which will reverse past
service responses to those first experiencing psychosis, moving from
expectations of life-long incapacity and patienthood to ones of
recovery, self management and a full independent integrated life in the
community.
* Information Technology (IT) enhancement grants for mental
health providers to support capacity development for transition to a
managed care environment.
* mobile rehabilitation and crisis teams,
* a training program to help primary care physicians improve
early identification of children with behavioral health needs
* reforms in the Sex Offender Management and Treatment Act
(SOMTA)
Protect Consumer Rights & Choices in New Medicaid Initiatives
This year’s budget incorporates an unprecedented number of
groundbreaking changes and reforms to our healthcare and social support
systems that, while they may ultimately improve care, can limit
beneficiaries’ choices and privacy protections. Examples include:
* assigning Medicaid beneficiaries to the new health home networks
of care but giving them the opportunity to “opt out,”
* requiring individuals to enroll in Medicaid managed plans that
will limit choice of services and providers and
* sharing patient information broadly through the use of
electronic records.
At the same time, health homes might give people new opportunities to
review the effectiveness and appeal of their current providers and
treatments and to more actively direct their care….if they get the
information and support they need.
The NYS Legislature can ensure that New York best protects the health
and rights of Medicaid beneficiaries by engaging in strong monitoring
functions to see that the Department of Health:
* Education: Adequately provides a widely available array of
culturally and linguistically competent and understandable educational
materials and strategies, in keeping with recommendations by the MRT’s
Health Disparities Work Group.
* Oversight: Conducts strong oversight over Medicaid managed care
plan administration of new components
* Appeals: Sufficiently educates enrollees about plan grievance
and appeals processes
* Assistance: Boosts the amount and use of enrollment brokers,
hence our strong support for the $3 million allocation in the Executive
Budget proposal
* Self Direction: Ensures that advance directives are prominently
displayed in new electronic healthcare record systems
Ensuring Access to Previously Protected Classes of Medications
Many in our community take years to find our which medication works best
for them, at what dosage and for how long.
Accordingly, our community has long fought policies that have sought to
deny or limit access to those particular medications and/or forced
people to fail on other ones that have failed us before simply because
they were on the state’s or a plan’s formulary.
These choices don’t belong to budget makers, bureaucrats or plan
officials…they belong as part of the personal relationship between
prescriber and person served.
That’s why we were so worried when the Legislature removed longtime
“prescriber prevails” protections for ‘protected classes’ of mental
health, AIDS, seizure and organ transplant meds. And that’s why we were
initially pleased when the Health Department, in apparent recognition of
our community’s concerns, announced that 19 out of 20 plans were going
to allow Medicaid beneficiaries to stay on those drugs…even if they
weren’t on their formularies.
Insufficient Beneficiary Education
Our hope turned to worry when the Department of Health’s and managed
care plans’ letters to Medicaid beneficiaries about the drug carve-in
were hard for many to understand and failed to explicitly mention the
grandfathering of mental health and other drugs.
Beneficiaries Being Denied, Delayed
Throughout our regional forums and highlighted at last week’s
Legislative Day, we have regularly heard concerns about the lack of
adequate consumer education and increased details of delays in getting
approval to stay on ‘grandfathered’ medications…and now outright
denials. Here are some details:
* An Owego nurse practitioner has shared with us documented
evidence of numerous denials of patient efforts to stay on the
anti-depressant Pristiq
* A Long Island psychiatrist reporting that a local plan would
only approve a 15 day supply at a time of the antipsychotic zyprexa,
which would require him to see her twice a month, a ‘waste of resources’
and that other plans were taking too long to respond to a continuation
of clozaril, leaving the beneficiary down to their last 2 pills as the
companies were ‘still working on it.’
* A NYC psychiatrist who has complained of being inundated with
unnecessary and time consuming ‘paperwork burdens’ just to get his
patient continued on grandfathered medications.
We urge the State Legislature to actively pursue the following remedies:
* Restore prescriber prevails protections for Medicaid managed
care medications for vulnerable groups like ours that used to be
guaranteed in fee for service. This will assure that plan promises to
ensure crucial continuity of care for our community is a promise that is
kept
* Ensure that the Health Department:
o step up its oversight over plan performance and assure the promised
automatic grandfathering of these medications, without costly delays
that waste prescriber time and jeopardize beneficiary’s health.
o redouble its efforts to educate beneficiaries about these patient
protections.
o publicly publish data demonstrating the numbers of beneficiaries who
experienced uninterrupted, undelayed continuity of care in receiving
their ‘grandfathered’ medications.
Alternatives to Involuntary Outpatient Commitment
Once again, the NYAPRS community continues to strongly oppose Kendra’s
Law’s highly controversial involuntary outpatient commitment program
that:
* relies on coercion whose effectiveness has yet to be
scientifically validated,
* is used primarily in New York City and Long Island in contrast
to almost every other county,
* continues to be disproportionately (66%) used for communities
of color and that
* now involves considerably more effort and costly time by local
and court officials in the wake of last year’s NYS Court of Appeals
ruling that sharing medical records of individuals under consideration
for a Kendra’s Law order is a violation of their HIPPA privacy rights,
unless their approval or a court order is obtained.
Instead, NYAPRS points to the state’s strong commitment to:
* favor the expanded use of modern, state of the art voluntary
outreach and engagement approaches,
* maximize the use of peer run services, and
* to advance more coordinated and integrated and effective care
approaches that are being promoted by the state’s new Behavioral Health
Organization and Health Home initiatives.
In fact, included in the Medicaid Redesign Team’s recommendations to the
Governor is an expectation of decreased use of involuntary court orders
as a measure of these programs’ effectiveness.
Finally, NYAPRS members strongly favor non-medical “alternative
treatments’ like acupuncture, reiki, shiatsu, meditation, yoga and
nutritional supplements. We will be strongly advocating for the funding
of these approaches in the more flexible capitated managed care
environment of the future.
Thank you for this opportunity to share our community’s concerns and
recommendations.
Saying ‘Yes’ to a Normal Life
Mental Health Advocates Say Housing, Jobs Needed to Help their Recovery
by Andrew Carden Legislative Gazette February 06, 2012
Hundreds of New Yorkers with psychiatric disabilities rallied in Albany
last week to urge Gov. Andrew Cuomo and state legislators to reinvest
savings from planned psychiatric facility downsizing into housing,
employment and peer support.
The New York Association of Psychiatric Rehabilitation Services, a
statewide partnership of tens of thousands of New Yorkers who use or
provide community mental health services, began its 14th Annual
Legislative Day with a two-hour event in the Kitty Carlisle Hart Theatre
at The Egg.
….Among the major initiatives continued under it are health homes and
managed care expansion, aimed at overhauling health and behavior health
care systems to improve outcomes by decreasing the use of hospitals and
emergency rooms.
“If we’re going to lower the money in hospitals, it must be reinvested
in housing, peer support and employment for the residents,” said
Rosenthal. “We’re on board with the governor’s support for health homes,
so long as the residents have more control over their care. These people
need a house and a job.”
Rosenthal offered praise to the governor and the New York State
Department of Health, though reiterated there is more work to be done.
“The governor is holding the system to be more accountable, trying to
give people more control over their health care and working to close
institutions,” said Rosenthal. “There are a lot of good people in the
Health Department, but they have much more oversight to do.”
….There are, Rosenthal said, about 80,000 people in New York state
with psychiatric disabilities. Many suffering from mental illness,
Rosenthal said, are often told by their health providers they will never
work, get married or own a home.
“We’re here to say ‘yes’ to a normal life for the 80,000,” said
Rosenthal. “You’re here to tell your legislators you want a job, want to
get married, want to own a home and want to have rights.”
Rosenthal polled the audience on how many are currently employed. While
a mere handful raised their hands, the vast majority raised their hands
upon asked whether they want to work.
…Issac Brown, CEO of Baltic Street, AEH, Inc., which works to support
recovery efforts among the mentally ill, seconded the need to renovate
empty buildings for individuals transitioning out of institutions.
Brown, who now owns a home in New Jersey, was himself once in support
housing.
“Twenty years ago, I was someone wandering the streets who couldn’t put
two and two together,” said Brown. “I know how difficult it is to be
homeless and without the necessary medication.”
http://www.legislativegazette.com/Articles-c-2012-02-06-81288.113122-Say
ing-yes-to-a-normal-life.html#222
<http://www.legislativegazette.com/Articles-c-2012-02-06-81288.113122-Sa
ying-yes-to-a-normal-life.html#222>
Mental-Health Advocates Want “Reinvestment” In Housing, Supports
By Cara Matthews Gannett News Service January 31, 2012
Hundreds of people with mental illness and advocates for the
mental-health system were at the Capitol today to lobby for the state to
invest more money in housing, peer support and employment opportunities.
They participated in the New York Association of Psychiatric
Rehabilitation Services’ 14th annual Legislative Day.
According to NYAPRS, Gov. Andrew Cuomo’s budget would continue the
state’s overhaul of its health and mental-health systems in ways that
are intended to continue consolidating and closing Office of Mental
Health psychiatric hospitals, improve coordination of care and help
avoid Medicaid hospitalizations and emergency-room visits. To achieve
these goals, the state has been expanding managed care, establishing
health homes and using behavioral health organizations. New York has 27
state psychiatric hospitals, about seven times the national average.
The organization said the state needs to do more than improve access to
medical services and medications. It wants the state to “reinvest” the
savings in community wellness, prevention and support systems. Research
has shown that housing and economic stability and a community support
system can reduce relapse rates and costly hospital visits, NYAPRS said
in a statement.
….Josue Hernandez, 32, of the Bronx said people with mental illness
have a lot to offer, but they need more help finding jobs and housing
and getting peer support after they are discharged from hospitals. He
participates in a psychosocial club in the Bronx called the Boulevard
Clubhouse, which provides placement in transitional jobs, advocacy and
referrals and social programs. He finished a transitional-employment
program and is now looking for a permanent position.
“My situation now, I’m dealing with finding a job after finishing my
program. And it’s been a little hard,” he said.
He and his wife, Margaret, got married last July. They both belong to
the Boulevard Club.
“They think that because I get disability and I work part time, they
think I have enough to support the both of us. So until he gets a job, a
lot of things are a stretch,” said Margaret Hernandez, 33.
Taxpayers spend more when someone is in a state psychiatric hospital
than if they live in the community, said Christian Florio, a
generalist/case manager at the Boulevard Clubhouse. “It actually costs
less if you reinvest the money back into the community,” he said.
http://polhudson.lohudblogs.com/2012/01/31/mental-health-advocates-want-
reinvestment-in-housing-supports/
<http://polhudson.lohudblogs.com/2012/01/31/mental-health-advocates-want
-reinvestment-in-housing-supports/>
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