FF FFrr rree ee

ee ee MM MM

ee eenn nn

AA AAnn nn

dd dd WW WW

oo oomm mm

ee eenn nn

Self-D

etermination &

Mental H

ealth

TT TThh hh

oo oomm mm

aa aass ss NN NN

ee eerr rrnn nn

ee eeyy yy

401 East S

tadiu

m B

ou

levard A

nn

Arb

or, M

ichig

an

Cu

rren

t Pu

blic

Po

licy in

Su

pp

ort

Cu

rren

t Pu

blic

Po

licy in

Su

pp

ort

of In

div

idu

als

with

o

f Ind

ivid

ua

ls w

ith D

isa

blitie

sD

isa

blitie

s

• Low to no E

xpectations

• Irrational and Contradictory E

ligibility Requirem

ents

• No focus on R

eal Life Goals and T

rue Quality

• Often C

omprom

ise Basic C

itizenship

His

tory

an

d M

ea

nin

gH

isto

ry a

nd

Me

an

ing

of S

elf-D

ete

rmin

atio

no

f Se

lf-De

term

ina

tion

• Based on a “principled

” approach—

a new

foundation for supporting all individuals

with disabilities

• Based on a new

set of system requirem

ents

--the “tools” of Self-D

etermination

Dire

cte

d a

t Re

-Th

ink

ing

Dire

cte

d a

t Re

-Th

ink

ing

• Quality

• The purpose of public funding

• The im

poverishment of an entire class

of individuals

• High costs of the public system

create

“The P

erfect Storm

”

Th

e P

rinc

iple

s a

nd

His

tory

Fro

m 1

99

3T

he P

rincip

les a

nd H

isto

ry F

rom

1993

•• •• FF FF

rr rree eeee ee

dd ddoo oo

mm mm- to live a m

eaningful life in the com

munity

•• •• AA AAuu uu

tt tthh hhoo oo

rr rrii iitt ttyy yy- over dollars needed for support

•• •• SS SSuu uu

pp pppp pp

oo oorr rrtt tt- to organize resources in w

ays that are life enhancing and m

eaningful –

Th

e P

rinc

iple

s a

nd

His

tory

Fro

m 1

99

3T

he P

rincip

les a

nd H

isto

ry F

rom

1993

• Re

sp

on

sib

ility- for the w

ise use of public dollars

• Co

nfirm

atio

n- of the im

portant leadership that persons w

ith disabilities must hold in a

newly designed system

Th

e B

len

din

g o

f Th

ese

Prin

cip

les le

ad

To

:T

he B

lendin

g o

f Th

ese

Prin

cip

les le

ad

To

:

•A

person determining one

’s own course to

live a meaningful life

•C

reating an EC

ON

OM

IC future

•A

llowing the individual to allocate public and

(private dollars) in ways that sim

ply make

sense to them

Th

e B

len

din

g o

f Th

ese

Prin

cip

les le

ad

To

:T

he B

lendin

g o

f Th

ese

Prin

cip

les le

ad

To

:

•C

rafting a highly personalized plan using personalpreferences and peer support w

here assistance isneeded

•A

llowing traditional and non traditional supports

and services•

Allow

ing the person to take the “responsibility” andacknow

ledge that they are the prime determ

iner inchoosing their path.

Th

e M

ost Im

po

rtan

t Ou

tco

me

of th

eT

he M

ost Im

porta

nt O

utc

om

e o

f the

Ble

nd

ing

of T

he

se

Prin

cip

les :

Ble

nd

ing

of T

he

se

Prin

cip

les :

•T

hat individuals who experience a disability

are the primary experts

•T

hat changes to the “public system” should

be led by individuals who experience the

disability

Th

e T

oo

ls O

fS

elf-D

ete

rmin

atio

n

•H

igh

ly perso

nal in

divid

ual b

ud

gets

•F

iscal man

agem

ent assistan

ce

•U

nb

iased assistan

ce con

flict-of-in

terestfree

Ind

ivid

ua

l Bu

dg

ets

•• A

line item expenditure sum

mary that

includes how the dollars w

ill be spentbased on the principle of “support”

Fis

ca

l Ma

na

ge

me

nt A

ssis

tan

ce

• The use of organizations that w

ill accept theallocation/individual budget and arrange for bills to bepaid and IR

S, labor and benefit issues to be

addressed based on the personal budget

•R

eport on a regular basis to both the fundingauthority and the person w

ith a disability

Un

bia

se

d A

ssis

tan

ce

•• T

he provision when D

ES

IRA

BLE

ofassistance in creating a life plan andsecuring the supports necessary toachieve the goals of recovery and therealization of a m

eaningful life

Re

-Th

ink

ing

Qu

ality

•C

urrent system relies at best on the low

standard of “satisfaction” w

ith human

services and interventions

•W

e need to move to quality of life in

addition to services

Re

-Th

ink

ing

Qu

ality

•A

strong focus on universal human aspirations for a

meaningful life targeting at least: a safe place to live,

connections with the com

munity, long term

comm

ittedrelationships and the production of incom

e

•In other w

ords, we need to look at the w

hole personand recognize the prim

acy of relationships, personalcontrol and the end of im

poverishment

Th

e P

urp

ose

of P

ub

lic F

un

din

g

•T

o enable individuals with disabilities to craft a

meaningful life deeply em

bedded in the comm

unity,pursue com

mitted relationships, becom

e activem

embers of their com

munities and generate incom

ew

ithout penalty

•T

o incorporate into public policy the belief that publicdollars should be targeted at notions of recovery thataddress essential issues around w

hat it means to be

a full human being and a citizen of this country

Th

e P

rom

ise

of S

elf-D

ete

rmin

atio

n

From

it’s inception self-determination w

as rooted in:

increased quality

increased power for individuals w

ith disabilities

increased status within the com

munity

more equitable distribution of public funds

Po

licy a

nd

Org

an

izatio

na

l Ch

an

ge

•S

elf-Determ

ination rests on the creation of new policy

and systemic structural changes that em

brace thebasic hum

an and civil rights•

The “T

ools” of self-determination are essential in

leading to these policy and structural changes•

Additional barriers m

ust be removed that prevent

persons with disabilities from

enjoying a quality lifebased on universal hum

an aspirations

Se

lf-de

term

ina

tion

in M

en

tal H

ea

lth

•It is im

portant in Mental H

ealth and other servicessystem

s to understand that taking responsibility forone

’s own recovery has em

erged as a high standard.

•T

his important aspect of self-determ

ination needs tobe prom

oted.

•H

owever prom

otion of recovery and personalresponsibility is or should be inseparable fromsupport for living quality lives.

Se

lf-de

term

ina

tion

in M

en

tal H

ea

lth

•

If this notion of quality can be adoptedand prom

oted for individuals living with

mental illness then w

e will need to forge a

public policy and financing agenda that will

address the forced impoverishm

ent ofindividuals w

ith mental illness.

We

Mu

st A

dd

ress:

•“H

omelessness”

•T

he incarceration of so many

•T

he inability to sacrifice meager federal benefits

in the frequently vain hope that employm

ent will

eventually sustain the individual.

•T

he low per capita investm

ent that many states

still make for this population.

Ad

dre

ssin

g F

orc

ed

Imp

ove

rish

me

nt

•T

he convergence of different and unrealistic eligibilityrequirem

ents for benefit programs serves to keep

individuals with disabilities virtually totally

impoverished in order to preserve often m

eagerbenefits.

•S

SI

•M

edicaid

Th

e H

igh

Co

sts

of th

e P

rese

nt S

yste

m

•“T

he Perfect S

torm”

•M

edicaid retrenchment

•O

verpowering dem

ographics

•S

hrinking workforce

Th

e S

yste

m o

f the

Fu

ture

•M

elded Medicaid and S

ocial Security w

aivers(for exam

ple, the Florida F

reedom Initiative)

•C

hanges to what can be purchased w

ithpublic dollars

•A

n end to the MO

NO

PO

LY of hum

anservices and the beginning of a free m

arketsystem

Th

e S

yste

m o

f the

Fu

ture

•S

afe and affordable housing

•A

new priority for psychiatric disability in

vocational rehabilitation

•N

ew system

crafted and led byindividuals w

ho experience disability

Th

e D

an

ge

rs

•R

esearch and data collection to date have been builtaround the old system

values that lack an adequatefoundation for determ

ining what needs to be

evaluated.

•S

elf-Direction has been m

arketed as the end productinstead of as a necessary m

eans to an end: am

eaningful self-determined life.

Th

e D

an

ge

rs

•W

ithout a new and deep foundation for

change based on important A

ME

RIC

AN

principles, the principles will be

comprom

ised

•S

ystems resist, are slow

to change andeasily sabotage these efforts.

Ne

w H

op

e

•S

elf-Determ

ination can offer a newsense of hope.

•It can augm

ent and support progressiveideas about recovery.

Ne

w H

op

e

•W

ith support, antiquated laws, rules and regulations

can be changed based on a new set of values that

deeply respects individuals who experience disability.

•S

elf-Determ

ination can add a foundation foraddressing the need for w

orking with the w

holeperson and not som

e bifurcated, clinically isolatedand labeled aspect of that person.

Se

lf-De

term

ina

tion

Is A

bo

ut:

•T

he restoration of full citizenship•

The pursuit of the A

ME

RIC

AN

dream•

Part of the broad civil and hum

an rightsm

ovement

•It is about free m

en and wom

en who exercise

those freedoms granted by the B

ill of Rights

and the Constitution and achieve full equality

Sk

ill-Bu

ildin

g fo

rS

yste

ms C

ha

ng

e

JJ JJee ee

aa aann nn

EE EE

.. .. TT TT

uu uull llll llee ee

rr rr

Oreg

on

Tech

nical A

ssistance C

orp

oratio

n

A T

ho

ug

ht fro

m

A T

ho

ug

ht fro

m V

ac

lav H

ave

lV

ac

lav H

ave

l

•• A better system

is not something that can be

• introduced like a new car; it m

ust become

• more than just a new

variation on an old

• degeneration.

•• A better system

will not autom

atically ensure a

• better life…

In fact, it is through helping a

• person create a better life that a better system

• will be created.

Th

ree

Va

riatio

ns

Th

ree

Va

riatio

ns

on

Syste

ms C

ha

ng

eo

n S

yste

ms C

ha

ng

e

•• Florida S

elf-Directed C

are

•• Piedm

ont 1915 (b)/(c) Concurrent

• Waiver: C

oncord, North C

arolina

•• Em

powerm

ent Initiatives Brokerage:

• Portland, O

regon

Flo

rida

Se

lf-Dire

cte

d C

are

Flo

rida

Se

lf-Dire

cte

d C

are

•• Created in 2001

•• The program

's mission is to create, m

aintain, and

• enforce an environment in w

hich participants can

• navigate the road to recovery on their own term

s and

• make inform

ed choices along the way

•• Overseen by an advisory board com

posed ofprogram

• participants and family m

embers

Flo

rida

Se

lf-Dire

cte

d C

are

Flo

rida

Se

lf-Dire

cte

d C

are

•• 100 participants @ average of $2,400 per participant

• per year)

•• A fiscal m

echanism that gives individuals w

ith a

• psychiatric disability access to mental health services

•• An independent brokerage service designed to

• support each individual's personal goals as each

• person navigates the road to recovery

Pie

dm

on

t 19

15

(b)/(c

) Co

nc

urre

nt

Wa

ive

r: Co

nc

ord

, No

rth C

aro

lina

•• Functions as P

repaid Inpatient Health P

lan•• S

avings to be reinvested into consumers

•• Free choice of providers w

ithin the PIH

P•• P

lan is to use savings in part as vehicle to• expand into consum

er-directed services for• M

edicaid-eligible people with M

H and/or

• substance abuse concerns

Em

po

we

rme

nt In

itiativ

es B

rok

era

ge

•• Funded by C

MS

Real C

hoice grant•• B

ased in M

ultnomah C

ounty, OR

•• Partnership betw

een OR

Office of M

ental• H

ealth and Substance A

buse, Portland S

tate• U

niversity and OT

AC

•• Consum

er/survivor Board of D

irectors• and staff•• 25 participants•• S

tarted April 2004

Se

ve

n B

rok

era

ge

Fu

nc

tion

s

•• Define goals and develop plans to achieve them

•• Access opportunities, resources and supports to

• achieve goals•• E

xpand range of employm

ent, housing, recreational• and other opportunities through com

munity

• development and netw

orking•• A

ccess information and education that increases

• capacity to make inform

ed decisions, achieve goals• and direct supports

Se

ve

n B

rok

era

ge

Fu

nc

tion

s

•• Pay bills and negotiate contracts necessary to

• implem

ent plans

•• Do em

ployment paperw

ork, background checks and

• hiring, training and supervision of staff

•• Monitor achievem

ent of plan goals and quality of

• supports, and make adjustm

ents as needed

Su

pp

ort B

rok

era

ge

Stru

ctu

re

•• Consum

er plans have up to $3000 to

• purchase needed supports

•• Brokerage dollars supplem

ent current system

• services

•• Consum

er/survivor driven feedback on the

• efficiency, effectiveness, and outcomes

Evid

en

ce

-Ba

se

d E

va

lua

tion

To

ol

•• Service Q

uality and Outcom

e Evaluation of C

urrent

• Mental H

ealth Services (com

pleted by consumer)

•• Service Q

uality and Outcom

e Evaluation of

• Em

powerm

ent Initiatives Brokerage

• (completed by consum

er)

•• Service Q

uality and Outcom

e Evaluation for E

IB

• Consum

ers (completed by support brokers using

• evidence-based practices – Internal Survey)

Cu

rren

t or T

rad

ition

al M

en

tal H

ea

lth S

erv

ice

s/B

rok

era

ge

Se

rvic

es

Baseline

Q1

Q2

Go

al A

ttain

me

nt P

lan

nin

g a

nd

Se

rvic

e B

ud

ge

ts

Baseline

Q1

Q2

Ind

ivid

ua

l Em

po

we

rme

nt

Baseline

Q1

Q2

Se

rvic

e Q

ua

lity a

nd

Ou

tco

me

Eva

lua

tion

for E

IB C

usto

me

rsS

um

ma

rized

as o

f Ja

nu

ary

26

, 20

05

Tota

l Custo

mers

: 22 2255 55

•C

ustomers w

orking in a competitive job - 99 99

–(C

ompetitive em

ployment m

eans a job for which anyone m

ayapply that pays at least m

inimum

wage)

•C

urrent living arrangements:

–Live w

ith relatives but is largely independent – 11 11

–Independent Living – 2

4

•C

ustomer’s E

ducational Status:

–E

nrolled in formal educational courses in college - 11 11

11 11

–N

o educational participation - 14

Som

e G

reat R

efe

rences

•C

ompetence Issues in S

elf-Directed C

are: Susan S

tefan[M

arch 2004]

•P

romoting S

elf-Determ

ination for Individuals with P

sychiatricD

isabilities through Self-D

irected Services: A

Look at Federal,

State and P

ublic System

s as Sources of C

ash-Outs and

Other F

iscal Expansion O

pportunities: Cook, T

errell andJonikas [M

arch 2004]

•H

istory, Principles and D

efinitions of Consum

er-Direction and

Self-D

etermination: U

nzicker [October 1999]

RE

CL

AIM

ING

OU

R L

IVE

S:

Peer-to-P

eer Services and the

Importance of S

elf-Direction in

Mental H

ealth System

s

JJ JJuu uu

dd ddii ii

CC CChh hh

aa aamm mm

bb bbee ee

rr rrll llii iinn nn

Directo

r of E

du

cation

and

Train

ing

Natio

nal E

mp

ow

ermen

t Cen

ter, Inc.

Law

rence, M

A

Wh

at A

re P

ee

r-to-P

ee

rW

ha

t Are

Pe

er-to

-Pe

er

Me

nta

l He

alth

Se

rvic

es?

Me

nta

l He

alth

Se

rvic

es?

• Program

s which are run and controlled by their users

• Also know

n as peer support, mutual support

or self-help

• Program

s include support groups, drop-in centers,

“warm

lines,” crisis programs, housing program

s,

and more

Who U

ses

Wh

o U

se

s

Pe

er-to

-Pe

er S

erv

ice

s?

Pe

er-to

-Pe

er S

erv

ice

s?

• Adults w

ho have been diagnosed with

serious mental illness

• Living in the comm

unity

• may or m

ay not also be participating in

formal m

ental health programs

• Participation is voluntary

Pe

er-to

-Pe

er S

erv

ice

s:

Pe

er-to

-Pe

er S

erv

ice

s:

An

Ex

am

ple

of S

elf-D

irec

tion

An

Ex

am

ple

of S

elf-D

irec

tion

• They are grass-roots and evolve from

expressed needs

• Their m

embers set the direction and

underlying philosophy

• Their m

embers becom

e forceful advocates

for their continuation and expansion

Ba

sic

Prin

cip

les o

fB

asic

Prin

cip

les o

f

Pe

er-to

-Pe

er S

erv

ice

sP

ee

r-to-P

ee

r Se

rvic

es

An

d o

f Se

lf-Dire

ctio

nA

nd

of S

elf-D

irec

tion

• Having a diagnosis should not lim

it the right to make

choices about one’s life

• People have inherent value and their choices should be respected

• People in peer-to-peer services experience the value of

contributing as well as receiving

• Peer support helps people to take responsibility for their lives

• Recovery is real and possible for all people diagnosed w

ith m

ental illness

Pe

er-to

-Pe

er S

erv

ice

s:

Pe

er-to

-Pe

er S

erv

ice

s:

An

Ex

am

ple

of S

elf-D

irec

tion

An

Ex

am

ple

of S

elf-D

irec

tion

• Professionals are trained that the existence of serious

mental illness im

pairs decision-making

• Paternalistic assum

ptions that professionals know best

• Coercion is inherent in the system

, both in-patient and out-patient

Ba

rriers

to S

elf-D

irec

tion

Ba

rriers

to S

elf-D

irec

tion

• The “brain disease

” theory of mental illness

• Perception of people diagnosed w

ith mental illness

as inherently unable to make “good” decisions

• Recovery is not seen as a real possibility

for most people

• Separation of m

ental health from general health and

from disability

Su

pp

ort fo

r Se

lf-Dire

ctio

nS

up

po

rt for S

elf-D

irec

tion

In M

en

tal H

ea

lthIn

Me

nta

l He

alth

• Surgeon G

eneral’s Report (1999)

• From

Privileges to R

ights, National C

ouncil

on Disability (2000)

• President’s N

ew F

reedom M

ental Health

Com

mission R

eport (2003)

Se

lf-Dire

ctio

n Is

Th

e F

utu

reS

elf-D

irec

tion

Is T

he

Fu

ture

of M

en

tal H

ea

ltho

f Me

nta

l He

alth

• • Grow

ing recognition of the rights of people with all

Grow

ing recognition of the rights of people with all

disabilities to control their own lives

disabilities to control their own lives

• • Organizing by people w

ith disabilities to change O

rganizing by people with disabilities to change

systems to m

eet their self-defined needs system

s to meet their self-defined needs

• • Mental health is N

OT

separate and apart M

ental health is NO

T separate and apart

NO

TH

ING

NO

TH

ING

AB

OU

T U

S,

AB

OU

T U

S,

WIT

HO

UT

US

!W

ITH

OU

T U

S!