Transcript Working Toward Sustainable Futures

In Support of People With
Developmental Disabilities and
Their Families:
Working Toward
Sustainable Futures
John Agosta, Ph.D.
Human Services Research Institute
7420 SW Bridgeport Road (#210)
Portland, OR 97224
503-924-3783
[email protected]
1
Topics
A bit of background and history
Some honesty about our surroundings
Facing the challenge to build a Sustainable
Future
What can we do about it?
What are YOU going to do about it?
2
Some History …
1950s and 1960s – Expansion of
public institutions – Segregation
1970s – Institutional reform –
Community services take root
1980s – Supports paradigm emerges
– Family support gains momentum
1990s-2000s – Institutional closings
– Accelerated community services
growth – Community reform – Selfadvocates speak up
3
Standing
Back...
Much was accomplished and
learned over the past 30 years
The footprint left by these efforts is undeniable.
Thousands of people and their families depend
daily on supports received through developmental
disability systems. And the bar was forever raised.
The significant changes made were generally
driven by evolving beliefs … systems flexed and
changed in response…
4
Let’s Be Honest About
Our Surroundings…
Budget stress and accelerating service
demand
Workforce shortages
Reliance on legacy systems
Continued push for community integration,
participation, contribution… self direction.
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Budget Stress and
Accelerated Service Demand
Increasing
Service Demand
Wait List
Resources
Gary Smith, HSRI
6
Work Force Shortages Are Real
Providers have trouble hiring and
keeping staff.
Families have trouble hiring respite
workers.
Pay is low. Benefits are not always
the greatest.
There are often issues to overcome
related to culture and staff.
We imagine systems that are well
staffed by well trained people.
We compensate with a mountain of
rules, pre-scripted routines and
paperwork.
He’s broke.
Must be a direct
support worker…
7
It’s A Living Museum ...
Customized
Employment
Apartments
1956... 1962... 1972 ... !976...1983... 1987.. .1992... 1997.. 2000... 2003
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Reliance on Old Ways
of Doing and Thinking
ISPs, IHPs, IPPs… oh my!
Direct support staff are
traditionally thought of as sitters, attendants and
skill trainers. And please fill out those forms!
People with disabilities are “clients,”
“consumers” … are often taught to be passive
care receivers… to do as they are told… to
follow a routine… to simply go along…
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"We
offer our consumers choice and
self-determination in the least restrictive
environment. They can package plastic forks,
knives, and spoons OR sort nuts and bolts."
“Don’t buy
it.”
Helping
Hands
Workshop
Professionals know what
words to say but they keep
doin’ the same old thing.
He’s not foolin’ me!”
“
Jazzy
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Continuing the Push…
“In the 1960’ s and earlier we were treated like
plants. You fed us, clothed us, kept us warm,
and wheeled us out to feel the sun.
In the 1970s and 80s you discovered we could be taught -we could learn -- and we were treated like pets. You
taught us all types of tricks and we stood by your side.
But now it is the 1990s. We are not plants. We are not
your pets.
We are people like you and we want to be treated as real
people. We want the same opportunities as anybody.”
Dirk Wasano -- Hawaii Planning Council on Developmental Disabilities
Self-Advocates
Say...
That Self-Determination
means that...
I am a person like all people.
I make my own choices.
I am the boss of my own life.
I make my decisions in my own life.
I do for myself… and not depend on others so
much.
Meeting of Self-Advocates from six states (1999)
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“They”…
Won’t let me eat in the TV room…. drink
soda on the couch or eat popcorn … Or
sleep in the TV room either
HEY!!!
No eating in the
TV Room!
Won’t let us wear make-up.
Make us go to bed at 9pm
Won’t let me out on a date.
Won’t let me use the phone to call my
girlfriend.
Say if I want to go somewhere, everyone
in the house has to want to go there too.
Don’t let me see the movies I want.
Won’t let me give a birthday card to staff.
Say that if I have something in my lunch
that I don’t like, I can’t give it away.
Silly Rules!!!
Are you kidding
me?
Jazzy
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Working Toward
Sustainable Futures
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Potential Solutions...
Uncle Sam Saves The Day. Keep trying to get
more money...
The Squeeze Play. Balance pressures with
available funds... Lacking significant additional
resources people are squeezed out or denied
entry, or the services available are modified.
Tough Love. Restructure and retool... Work for
a “Sustainable Future.”
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Tough Love!
Systems had serious problems
before state budgets crashed.
As long as the pie was growing,
systems could “afford” to work
around their problems.
Funding growth will be slower than in the past and
insufficient to buy our way out of problems.
In the present climate and for the foreseeable future, not
addressing the problems will make a bad situation
worse.
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Sustainable
Futures …
An action agenda anchored in values and
committed to making the changes
necessary to secure the best outcomes
possible for people with developmental
disabilities and families.
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Assumptions
Government’s role will be what it
will be… important… essential…
yet modest.
Medicaid funding is essential, but
let’s not define “support” by what
is “Medicaid reimbursable”
We must look to each other and
our communities to promote a
culture of mutual aid… mutual
support…
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What Can We Do
To Develop a
Sustainable Future?
1. Settle on where we are
going…
2. Commit to Self-Direction…
3. Assure that our service
system can get us there…
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1. Settle on where we are going
Two World Views to Think Through
Is the primary
consideration so that…
Choices that exemplify
community integration or
segregation are ALL equally
acceptable
Is the primary
consideration so that…
Policy favors options that promote
community integration and
discourages, even eliminates,
options that segregate people
from their community.
Which is it in this room?
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Be Principled
About…
A belief in community integration…. People
want to live in the community and live a life
like anyone else.
A belief in self-direction… People want to
be in control of their own lives.
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The values foundation …
We have learned …




Individual/family direction works
Effective person-centered planning works
Integration and inclusion amplify resources
Supporting people to make contributions
amplifies resources
Action pathway – Resolute pursuit of
principles of person-centered supports
based in inclusive communities
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2. Believe in Self-Directed
Systems…
Self Advocates want to
take a lead in their own
lives.
Honor a person’s
disability
Good support can help
set a person free
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Here’s a Thought…
In life, there are four essential
needs…
To have something to do…
To have someone to love…
To have something to believe in…
To have something to hope for…
Lou Holtz addressing the Notre
Dame football team, 2005
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But it’s not
always
easy…
It can be a
jungle out
there!
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Two Myths About Disability
People with
disabilities can’t do
anything.
People with
disabilities can do
anything if the
persevere… or try
hard… or get help.
Honor The Disability
Mark O’Brien
Breathing Lessons
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Considering the “Rub”...
Who Is “The Self” In Self-Determination?
Family
Directed?
State
Directed?
Self
Directed?
Provider
Directed?
Broker
Directed?
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When We Ask Self-Advocates...
(In New Hampshire, Texas, Oregon, Colorado, North
Carolina, Arizona, Idaho, Virginia, Missouri, Montana ...)
What or who helps you to be in control
of your life?
Very quickly someone will say... “My
Parents.” And many will agree.
What or who keeps you from being in
control of your life?
Very quickly someone will say... “My
Parents.” And many will agree.
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... Yet Good Support
Can Set You Free!
Place the individual in meaningful position of
power where his/her opinion is taken seriously
(assume competency).
Listening well to the individual, including a 3rd
party listener.
Provide the person good information.
Apply useful assistive technology.
Plan for meaningful supports to counterbalance
the effects of intellectual disability.
And so... What is “Bad” Support?
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AGE of the
Person
With Disabilities
Families can help -- Strong, positive support -- Self-determined individuals
Families make most
important decisions
Family-Directed Supports
Self-advocates make
decisions about their life.
Self -Directed Supports
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Just One
Thing More…
Self Advocacy…. It’s more than individuals
wanting to command and live life…
It’s grown into a “movement”
Standing together… self advocates have
opinions… opinions that matter
Check out Self Advocates Becoming Empowered at:
www.sabeusa.org
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SABE Tells It Like It Is!
(September, 2005)
Listen
To
Us!
Close institutions.
Get us real jobs.
Close sheltered workshops.
Give US the money to run OUR lives.
Money follows the person means it is OURS not
the program’s.
We have the right to make our own decisions
with or without the support of others.
WE CAN RUN OUR LIVES.
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A Word About…
YOUTH
Younger self-advocates have progressive
expectations about their lives.
They reject the status-quo that today’s
service systems ladle out to them
Life means more to them than a group home and a
sheltered work placement.
Tattoos all around!
The future rests with them!
Check out the National Youth Leadership Network at:
www.nyln.org
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www.
theriotrocks.org
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3. Assure that our service
system can get us there…
The System Stinks!
Agosta, ‘96
You can trust us.
We’re professionals!
What a relief.
Meeting Individual Needs
A Three
Legged
Approach!
Community
Individuals
Government
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1st leg… Government
A need to settle on a
direction…
A need for greater
efficiency…
A need for greater
collaboration
37
Efficiency
Reform: person-centered system architecture
Disinvest from low value/high cost services
Medicaid!
New business models… Open markets
“Non-traditional” providers/direct purchase such
as “self directed systems, microboards...)
38
Collaboration
Collaboration
Across-populations
Across systems… “systems
integration” (state developmental
disabilities services, social security,
TANF, Medicaid, schools…)
Across provider networks
…a mutually
beneficial and welldefined relationship
entered into by two
or more organizations to achieve
common goals. The
relationship includes
a commitment to a
definition of mutual
relationships and
goals; a jointly
developed structure
and shared responsibility; mutual
authority and
accountability for
success and sharing
of resources and
rewards.
Michael Winer
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2nd leg… Community
Enlisting community
businesses
Enlisting faith-based
organizations
Enlisting community
serving organizations
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How We Think Of Some Communities
Lack of
Services
Gangs
Drugs
Poverty
Violence
School
Failure
Language
Barriers
Unemployment
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Another Way To Think....
Local
Institutions
Community Assets
Community
Serving
Organizations
Individuals &
Groups of People
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3rd leg…
People Helping People
Me +
Me + Me
= We
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Who Are
We?
44
People Helping People
Toy Exchanges…
Equipment Exchanges
Exchange Networks
Micro-Loans
Peer Support Networks
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Establishing a Sustainable Future for
Individual and Family Supports
Guiding
Principles
State
Agency
Multi-Tiered
Approach to
Individuals &
Families
Supportive
Learning
Community
Individual
and Family
Outcomes
Family Input
and
Guidance
A Closer
Look
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Establishing a Sustainable Future for
Individual and Family Supports
Individuals with
Developmental Disabilities
and Their Families
Potential Demand
for Services
Includes all individuals
with a developmental
disability. Most live home
with their family.
Entry
Family-to-Family
Peer Assistance
and Exchange
Networks
Assistance from
Businesses and
Organizations, and
other Public
Agencies
Families
& Staff
Family Support Funds
Case mangers develop Support Plans for
individuals n and families
Family Support Funds
Those with higher needs
receive additional services
through “traditional” family
support programs.
Other Service Programs
Individuals and families
with still higher needs
access more intensive
services.
Entry
HCBS Waivers
Family Support
Cooperative
Access to peer support
and other supports
available through a variety
of community resources.
Other Programs
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What Are You Going
To Do About It?
What traditions,
commitments and vision
define us?
If I am only for myself,
who is for me?
What assets can we
count on and leverage?
And if I am only for
myself, what am I?
What alliances can
we forge?
And if not now, when?
Hillel
What opportunities will we
create?
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Pathway to sustainable
futures will be different
Each community, locality and
state is in a different spot
Opportunities differ
But it’s the same critical question: What
changes do we need to make to achieve
the best possible outcomes for people
and families going forward?
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The Challenge Is To
Find Ways To ...
Encourage, model and
support an “action bias”
consistent with
retooling...
Anyone who has
never made a
mistake has never
tried anything new.
Albert
Einstein
Encourage, nurture and
support alliances that
work to mobilize energy
to act...
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The Fundamental Issues
to Overcome Are:
Technical
Can we figure out ways to make
the structure work in a technical sense?
Political
Do we have the will to make changes to the flow of
money?
Can we abandon program (slot) driven approaches?
Can we move from supply centered to demand
centered systems?
So Let’s Get Started!!
Talk… Discuss…
Deliberate…. Change!
Change imposes choice.
Choice imposes ambiguity.
Ambiguity promotes discussion.
Discussion promotes
deliberation.
Deliberation forms opinion.
Opinion leads to action.
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Concluding Thoughts
Let’s Agree to Change.
Change imposes choice.
Choice imposes ambiguity.
Ambiguity promotes discussion.
Discussion promotes
deliberation.
Deliberation forms opinion.
Opinion leads to action.
Need and Opportunity
A service system for [people with
disabilities] and others in need of
support will have to be a system in
constant change. It has to be
continuously developed, if the
'customers' are not to be left behind
and to become hostages of an
outdated way of doing things."
Alfred Dam (undated)
Denmark
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If not YOU, then who?
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