mental health services for deaf people: preserving the gains in a changing healthcare world

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Preserving Mental Health Care for Deaf People 25 September 2014 © 2015. Office of Deaf Services 1 © 2015. Office of Deaf Services Alabama Department of Mental Health • This “presentation” isn’t intended to be an exposition of received wisdom from the Oracle at Delphi – it is a chance to exchange ideas. Please share your thoughts Michelle Master Degree in Social Work from Syracuse Working with deaf mental health services for 19 years. Direct services for 18. Currently run adolescent group home for the deaf on the campus of New Jersey School of the Deaf Liasion to Mental Health Group under Public Policy since 2014 Steve Masters Degree in counseling from Gallaudet I have been working with seriously mentally ill people for over 26 years – 23 of them as a state director (10 years in MO, 13 in AL) I have served as a plaintiff’s consultant during numerous lawsuits including those in Alabama, Missouri, and Georgia I have been a system design consultant for several other states I am also a self-professed political junkie who specializes in macro systems analysis

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When: Session #1Track: Legislative AdvocacyWho: Michelle Cline and Steve HamerdingerDescription: This workshop focuses on Priority 2014-GA-PUB-049, which is being addressed by the Public Policy Committee’s Mental Health Expert Group. This workshop will provide an overview of the status of mental health services today, how we got there and what we need to do to preserve hard-won gains. Time will be given to discussing the impact of healthcare integration and how that effort endangers rights won by deaf people in the mental health arena. Strategies related to advocacy will be discussed. CEU: Professional Studies

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Page 1: Mental Health Services for Deaf People: Preserving the Gains in a Changing HealthCare World

Preserving Mental Health Care for Deaf People 25 September 2014

© 2015. Office of Deaf Services 1

© 2015. Office of Deaf Services

Alabama Department of Mental Health

• This “presentation” isn’t

intended to be an

exposition of received

wisdom from the Oracle

at Delphi – it is a chance

to exchange ideas.

Please share your

thoughts

Michelle

• Master Degree in Social Work from Syracuse

• Working with deaf mental health services for

19 years. Direct services for 18.

• Currently run adolescent group home for the

deaf on the campus of New Jersey School of

the Deaf

• Liasion to Mental Health Group under Public

Policy since 2014

Steve

• Masters Degree in counseling from Gallaudet

• I have been working with seriously mentally ill

people for over 26 years – 23 of them as a

state director (10 years in MO, 13 in AL)

• I have served as a plaintiff’s consultant during

numerous lawsuits including those in

Alabama, Missouri, and Georgia

• I have been a system design consultant for

several other states

• I am also a self-professed political junkie who

specializes in macro systems analysis

Page 2: Mental Health Services for Deaf People: Preserving the Gains in a Changing HealthCare World

Preserving Mental Health Care for Deaf People 25 September 2014

© 2015. Office of Deaf Services 2

• 1. Priority Code: 2014-GA-PUB-0492014-2016 Priority: Preservation of Mental Health Services that Meet the Needs of Deaf People

• Increasing Educational Opportunities to become Mental Health Counselors and create a Position Statement on the Impact of Managed Care on the future of Mental Health Services to the Deaf. The Mental Health section under the Public Policy committee will be tasked with two goals:

– A) Develop a position statement on Managed Care in Mental Health, which recommends specific minimum guarantees and guidelines in what support (access-based) Managed Care Entities will give Deaf people in need of Mental Health or Behavioral Health services.

– B) To establish a dialogue with higher education institutions along with federal entities for the purpose of expanding existing educational programs for developing Mental Health counselors with the intent of increasing the number of Deaf individuals becoming mental health counselors. Also include a discussion on possible funding streams for such programs, both existing and new, including stipends.

• Brief history of Mental Health Expert group (Michelle)

• What our “charge” is

• The Butterfly Effect, aka The Chaos Theory

In chaos theory, the butterfly effect is the sensitive dependence

on initial conditions in which a small change in one state of a

deterministic nonlinear system can result in large differences in

a later state

• In any large system, introduction of a new variable will

inevitably have unintended consequences

Page 3: Mental Health Services for Deaf People: Preserving the Gains in a Changing HealthCare World

Preserving Mental Health Care for Deaf People 25 September 2014

© 2015. Office of Deaf Services 3

1. A body will remain at rest of moving at a constant speed in a

straight line unless it is acted upon by some force.

2. The acceleration of an object is directly proportional to the sum

of the forces acting upon it and inversely proportional to its

mass

3. Whenever one object exerts a force on a second object, the

second object exerts an equal and opposite forces back on the

first object

• Deaf people were mentally defective (surdophrenia)

– Large groups of deaf people in mental institutions (both

psychiatric and “MR”)

• With a few exceptions, most hospitals were

“warehouses”

– Mistreatment and abuse were common

– Communication access was practically non-existent

Page 4: Mental Health Services for Deaf People: Preserving the Gains in a Changing HealthCare World

Preserving Mental Health Care for Deaf People 25 September 2014

© 2015. Office of Deaf Services 4

• Services for deaf people slowly improved beginning in the late 60s

– NY Psychiatric Institute Deaf program

– St. Elizabeth (Washington)

– Michael Reese Hospital (Chicago)

• These were all still institutions, but they began to put deaf people together

in specific wards

– Recognition that you can’t “treat” people you cannot communicate

with…

“[Mental Health] is unique among the medical fields in that most of the symptoms are conveyed by or through communication, and communication also is the primary method and nature of treatment.”

Dr. Robert Q. Pollard

Professor of Psychiatry, University of Rochester

• Until the 70’s deaf people who were not English-literate were considered

mentally defective

– ASL was not recognized as a language

– Deafness itself was considered an indicator of mental illness (surdophrenia)

– Institutionalization (warehousing) was normal

• 1987 Does vs. Wilzack was the first legal attempt to change the status quo

– Required the state of Maryland to provide linguistically appropriate services in the

state hospital – Led to the Deaf Unit at Springfield

• Not the first such unit, but the first required by the courts

Page 5: Mental Health Services for Deaf People: Preserving the Gains in a Changing HealthCare World

Preserving Mental Health Care for Deaf People 25 September 2014

© 2015. Office of Deaf Services 5

• Significant research in the 60’s and 70’s

– Acceptance of ASL as a language

• Expansion of programs where there were large groups of deaf people

– This was not universal, however - for most of the country, deaf people were either institutionalized, in jail, or ignored

• Important: Community Mental Health Act of 1963

– Start of a long standing pattern of closing state hospitals (deinstitutionalization)

• Only half of the CMHCs

were ever built

– None fully funded

• Cost shift from States to

Feds

– Medicaid (back then) was a

gravy train

Good Intentions

Bad Results

• Groundbreaking work in late 70’s and early 80’s led to the first successful lawsuits against state mental health authorities

– Handel et al v. Levine et al, 1984 (Minnesota)

– Jane Doe v. Wilzack, 1987 (Maryland)

• These lawsuits led to de-institutionalization of deaf people, BUT…

Often released into the streets without supports

Page 6: Mental Health Services for Deaf People: Preserving the Gains in a Changing HealthCare World

Preserving Mental Health Care for Deaf People 25 September 2014

© 2015. Office of Deaf Services 6

• McKinley v. Bevalagua, 1988 (South Carolina)

– First state-wide system of community services

• Tugg v. Towey, 1994 (Florida) Court Order

– Interpreters are not equal access

• Devinney v. Maine Medical Center, 1998 (Portland Maine Maine)

Settlement

– “Effective” needs to be determined by the deaf consumer not what’s easiest for the

provider

• Bailey v. Sawyer, 1999 (Alabama) Settlement

– The state must offer a continuum of care led by s statewide coordinator. Required

training and certification of interpreters

• Comas v. Schaefer (2012)

• Another continuum of care of care case. SCD, standards of care

• Belton v. Schelp, 2013 (Georgia) Court Order

– Reiterates Interpreters are not equal and requires the state to set up a continuum of

care similar to Alabama and South Carolina

• Deaf people do not receive equal access, even when “policy” is

followed

• ASL is a language and as such, deaf people had a distinct culture

• Latter suits required a continuum not just some single program

• Consumer’s choice (preferred language) needed to be respected

(highly individualized)

• Presumption that direct services are better than interpreted

services

Page 7: Mental Health Services for Deaf People: Preserving the Gains in a Changing HealthCare World

Preserving Mental Health Care for Deaf People 25 September 2014

© 2015. Office of Deaf Services 7

“The use of interpreters does not achieve ‘equal communication’ between

the State’s mental health care providers and deaf consumers as that

between the State’s providers and hearing consumers.”

U.S. District Judge Richard Story,Northern District of Georgia

“The Provision of mental health services for the deaf by HRS in District XI

serving Dade and Monroe counties shall include, to the extent available in

the community, mental health counselors, deaf or hearing, with sign

language ability, who possess by training, education, or experience, an

understanding of the mental health needs of the deaf community.”

U.S. District Judge K. MICHAEL MOORE.U.S. District Court, Southern District of Florida, Miami Division

• All three cases were

in the 11th Circuit,

though in different

districts

– Together, at least in

the 11th circuit, there

is a clear precedent

for direct services

– Implications of these

suits for other LEP

minorities

Geographic Boundaries Of United States Courts of Appeal and United States District Courts

• In 1999, the state association of the deaf alleging that services were not appropriate

– In many ways, it was a “friendly” lawsuit, in that ADMH did not intrinsically disagree with the charges, but felt unable to act on them due to fiscal and legislative constraints

• Suit was similar to South Carolina’s in that it sought to:

– Create a linguistically and culturally appropriate service

– Limited to mentally ill

– Based around in-patient services

• A major difference between AL and SC is that SC state runs the CMHCs

– Led to friction between the plaintiff (AAD) and ADMH

• Plaintiffs wanted all state-operated like SC but DMH said it could not do that

Page 8: Mental Health Services for Deaf People: Preserving the Gains in a Changing HealthCare World

Preserving Mental Health Care for Deaf People 25 September 2014

© 2015. Office of Deaf Services 8

• Encourages the merger of “behavioral health” with the medical system

– This is a consequence of Mental Health Parity Act

• Rules made insurance more costly by requiring coverage of many things they didn’t previously have to cover with all policies

– Pressure to keep costs to the consumer down led to narrower networks, lower payments to doctors,

• Some states responded by:

– Expanding Medicaid

– Moving toward “managed care”

• Traditional way to buy healthcare is “fee for service”

• Managed care means that a healthcare organization

gets a set amount for provide (manage) all the care for

all the people in their program

– This can be fully or partly “risk-bearing”

• A brief (and highly simplified) look at

capitation

– The HCO will receive a contract-

stipulated payment from which they

are responsible for providing all care

needed by all members enrolled in

their program

• “Per member, per month” PMPM

– Costs above the PMPM are

“swallowed” by the HCO

• The PMPM is determined by actuarial

assessment of people in service area

– Key questions:

• distribution of

age/gender/ethnicity, etc.

• Distribution of regional specific

illnesses

– From that they figure out the PMPM

Page 9: Mental Health Services for Deaf People: Preserving the Gains in a Changing HealthCare World

Preserving Mental Health Care for Deaf People 25 September 2014

© 2015. Office of Deaf Services 9

• To make this work, state Medicaid assumes that all

money intended for FMAP match is available to them

for healthcare – often without regard to which

population the funds are earmarked

• Money earmarked for mental health care is sucked

up (further “encouraging” integration of all mental

health with medical services)

State

Federal Medical

Assistance

Percentages

Enhanced Federal Medical

Assistance Percentages

Mississippi 73.58 81.51

Idaho 71.75 80.23

West Virginia 71.35 79.95

Arkansas 70.88 79.62

South Carolina 70.64 79.45

Utah 70.56 79.39

District of Columbia** 70.00 79.00

Kentucky 69.94 78.96

New Mexico 69.65 78.76

Alabama 68.99 78.29

Arizona 68.46 77.92

Georgia 66.94 76.86

Indiana 66.52 76.56

Montana 65.90 76.13

North Carolina 65.88 76.12

Michigan 65.54 75.88

Tennessee 64.99 75.49

Nevada 64.36 75.05

Oregon 64.06 74.84

Missouri 63.45 74.42

Ohio 62.64 73.85

Oklahoma 62.30 73.61

Louisiana 62.05 73.44

Maine 61.88 73.32

Florida 59.72 71.80

Wisconsin 58.27 70.79

Texas 58.05 70.64

Kansas 56.63 69.64

Iowa 55.54 68.88

American Samoa* 55.00 68.50

Guam* 55.00 68.50

Northern Mariana Islands* 55.00 68.50

Puerto Rico* 55.00 68.50

Virgin Islands* 55.00 68.50

Vermont 54.01 67.81

Delaware 53.63 67.54

Nebraska 53.27 67.29

Hawaii 52.23 66.56

Pennsylvania 51.82 66.27

South Dakota 51.64 66.15

Colorado 51.01 65.71

Illinois 50.76 65.53

Washington 50.03 65.02

Alaska 50.00 65.00

California 50.00 65.00

Connecticut 50.00 65.00

Maryland 50.00 65.00

Massachusetts 50.00 65.00

Minnesota 50.00 65.00

New Hampshire 50.00 65.00

New Jersey 50.00 65.00

New York 50.00 65.00

North Dakota 50.00 65.00

Rhode Island 50.00 65.00

Virginia 50.00 65.00

Wyoming 50.00 65.00

• Alabama Example:

– DMH has $40 million out of a total $114 million GR funds earmarked for

FMAP (FY13)*

•Total DMH budget $888 M, of which $537.3 is federal money

– Alabama Medicaid acts as if that is their money!

– What happens to the “community safety net” if that money is gone?

*There are other state funds used for FMAP

• Important to note that 35 states have some form of risk bearing capitation

on some of their Medicaid services

– Long term care is common

• In most states, interpreters are NOT a Medicaid service – providers

expected to pay for interpreters themselves

– It takes longer to provide deaf people the same outcome, but rates are set for hearing

people

• Within the context of quality assurance measures, state Medicaid agencies

make it clear they have no interest in measuring services that are not

directly funded by Medicaid – net effect: only certain services are approved

officially “important”

Page 10: Mental Health Services for Deaf People: Preserving the Gains in a Changing HealthCare World

Preserving Mental Health Care for Deaf People 25 September 2014

© 2015. Office of Deaf Services 10

• One important factor is EBP

– Federal push to pay only for “approved” EBP

– Almost none are researched for deaf consumers

– Almost all are “assumed” to be appropriate for deaf people

with interpreters – but there is no research to back it up

“Psychiatry is unique among the medical fields in that most of the

symptoms are conveyed by or through communication, and communication

also is the primary method and nature of treatment.”

- Dr. Robert Q. Pollard

• Let’s talk about quality of communication access most deaf people have in

medical settings (at least outside of the big cities) – how does this compare

to best practice in mental health treatment?

• If mental health treatment follows the same standard of communication

access as is accepted for, say a doctor visit, what does that mean for deaf

people with mental illness

• As recent as 7 years ago, Kentucky’s services for deaf people with mental

illness was as good or better than national benchmark programs

– No lawsuit

• Change to managed care = shuttering of most of the regional offices

– Shift from signing therapists to interpreters only

– State Director is essentially a contract monitor (the same is true in North

Carolina)

Page 11: Mental Health Services for Deaf People: Preserving the Gains in a Changing HealthCare World

Preserving Mental Health Care for Deaf People 25 September 2014

© 2015. Office of Deaf Services 11

• Over the next five years we will see:

– More states putting more services in to risk-bearing capitation

– Fewer specialized services – including services for deaf people with

mental illness

– Existing programs for deaf people will respond to funding limits by:

•Changing admission criteria

•Limiting service area

•Opening to serve people other than deaf people (Example: NDA’s focus on autism)

– Increase in the number of deaf people with mental illness in prison

• When the mental health

system cannot cope, prisons

become dumping grounds

– Largest mental health

program in the country is in

the Los Angeles County

Jail! ( Almost 1,500 people per NPR)

Heather MacDonald stated in City

Journal, "jails have become society's

primary mental institutions, though

few have the funding or expertise to

carry out that role properly... at Rikers,

28 percent of the inmates require

mental health services, a number that

rises each year."

• Several position papers

– Position Statement on State Mental Health Coordinators Serving Deaf

and Hard of Hearing Individuals (2013)

– Position Statement on Mental Health Services for Deaf Children (2008)

– Position statement on Culturally Affirmative and Linguistically

Accessible Mental Health Services (2008)

– Position Statement on Mental Health Interpreting Services with People

who are Deaf (2010)

– Promoting a Bill of Rights to Ensure Appropriate Direct Mental Health

Services for Individuals Who are Deaf or Hard of Hearing (2014)

Page 12: Mental Health Services for Deaf People: Preserving the Gains in a Changing HealthCare World

Preserving Mental Health Care for Deaf People 25 September 2014

© 2015. Office of Deaf Services 12

• Expert Group working on a new position paper

– Four major areas of focus

1. Preserving gains made

2. Developing culturally and linguistically appropriate team-based care

3. Increasing the number of ASL fluent clinicians across the healthcare spectrum

4. Duality of Challenges: Appropriate care in a cost containment environment

• Intervening in significant cases

• Begin an anti-stigma effort – be willing to talk about mental

illness and substance abuse in the deaf community

• Develop a mental health committee in your state chapter – be

sure it is inclusive of all deaf/ hard of hearing people

• Become familiar with CLAS standards* and how you can use

them to get language access

* Culturally and Linguistically Appropriate Services standards

• Connect with your state legislators and major policy makers

– Get them to introduce a Mental Health Bill of Rights

– Get deaf community representatives on mental health advisory

committees

• Be aware of the “law of unintended consequences”

Page 13: Mental Health Services for Deaf People: Preserving the Gains in a Changing HealthCare World

Preserving Mental Health Care for Deaf People 25 September 2014

© 2015. Office of Deaf Services 13

• Get involved with state PAIMI (protection and advocacy) and

other advocacy groups like NAMI

– Educate them about how mental health services treat deaf people

• Actively litigate any denial of communication access at any

point of access

– Since the system will follow medical services, we need to

focus on forcing those to change