APSE Breakout Session
Try Another Way: Why Modern Systems
Don’t Work and What Can
I’m Bill Krebs
-In the process of being employed as a travel trainer so people can get to their
jobs. I have been wanting this job for years. I hope to have my own business
someday, and I’m real good at what I do.
-The non-profit organization that has supported me is funded by various
service systems including the Pennsylvania Offices of Developmental
Programs and Vocational Rehabilitation in Philadelphia.
-These organizations and others constitute my current system relationships,
though I have others, going back to sheltered work and education.
-I am also engaged with a number of organizations dedicated to selfdetermination, independent monitoring for quality, and employment,
including the Pennsylvania APSE on which I serve as a state board member.
I’m Dana Olsen
System veteran of 33 years with Pennsylvania Office of Developmental
Programs, where I helped start the Community Living Arrangements
(CLA)program, PASS, employment first, lifesharing, Independent Monitoring
for Quality (IM4Q),and other statewide initiatives.
My career in human services began in 1973, at a sheltered workshop called the
Shut In Society.
I stay in this work because it feels right. With my current involvement in PAAPSE, a history coalition honoring people with disability, the state DD
Council, and writing, I’m in as deep now as ever.
I’ve been a presentation partner with my friend Bill Krebs for a decade. I
appreciate that he’s smart, fun, a great dresser, and fearless. He makes an
excellent speaker and facilitator as you are about to appreciate.
And You Are
1.
Individual receiving disability services, life-sharer, loved one,
neighbor, advocate, family member,
2.
System funded direct support worker, employment specialist, job
coach, residence manager, life-sharer, or family member.
3.
A friend, citizen advocate, life-sharer, volunteer who provides
support without system compensation
3.
Policy or system wonk, program development specialist
4.
Organization executive, administrator, program director
5.
Program monitor, auditor, case-manager, inspector, evaluator
6.
Academician, student, and researcher, indenpendent analyst
Just To Be Clear
• How many of you have worked in the same or a
similar service system for 5 years or less?
• How many of you have worked in or with human
service systems for 20 years or more?
What We’re Doing Here
Walking through some mental exercises….
• The first set of exercises reviews how service
systems stand up to the everyday living outcomes
that people seek in life
• The second set engages a simple process to step out
of system assumptions in considering new ways
• The third set considers characteristics of
community frameworks that walk the talk
On The Basics
Do we generally agree that:
Human services have a fundamental responsibility to
support people with disability in securing a job, a
home, and community resources.
People receiving services deserve to decide where, how
and with whom they live, work, and utilize community
resources
Services must be safeguarded to ensure health, safety,
rights, and cost-effectiveness
Bill’s Take and Others
• In your life, how well has the service system done in
getting you on a career path, helping you out to
make your life less challenging at home, or making
use of community resources?
• How well have the service systems done in taking
direction from you? Have they been user friendly,
effective and efficient?
• What do you think about the system now compared
to what you thought of it in past years?
Have You Noticed How Your
Service Systems
…Fail and succeed in supporting people to obtain a job and
a home of their choosing, or secure lasting community ties?
…Are invested in agency operated programs where groups
of people with disability work, live, or associate among
themselves, without engaging in alternatives outside of the
network?
…Ensure health, safety, and quality by compliance with
special funding, rules, and standard practices that are not
applied by the public in their homes, businesses, and
community venues?
What’s Your Take?
1. Are people in your service system finding homes and
work like they could be?
2. Do you see your service systems taking on the tough
challenges with a reasonable degree of urgency,
integrity, and commitment?
3. Do you sense that your service systems really know
how they will turn things around to achieve everyday
outcomes with people?
Breaking This Down: Values
and Reality
Value
System Reality
Self
Determination
Major life decisions controlled by the service network,
not the people who receive services, their families, or
the community resources that they might otherwise
access
Inclusion or
Integration
Sheltered programs that congregate and exclude people
on the basis of disability and do not develop ties with
community resources
Choice
Most people in systems still do not participate in
selecting where or with whom they live, work, and
socialize
Quality and
Cost
Effectiveness
Minimum standards, escalating costs, and little if any
links to quality of life measures
We Ask Ourselves
ARE THESE SERVICE SYSTEMS AT ALL
COHERENT?
• Are the right organizations
• Doing the right things
• With the right resources and support
• In the the right ways?
Bill’s Take and Others
• Did you ever consider how it would be if your
support coordinator was your friend, a relative, or
an advocate?
• Would you like to comment on how providers of
pre-vocational services helped or didn’t help prepare
you for a career or job?
• We hear a lot about the system being screwed up.
What’s this about for you?
Quiz Time:
• How would you rate your service systems in terms
of their coherency with the values of SelfDetermination, Inclusion, Choice and
Accountability?
• Very or almost always coherent
• Generally coherent
• Coherent sometimes or in some ways
• Hopelessly incoherent
Why Is This?
-What contributes to system shortfalls in terms of
achieving everyday living outcomes like employment?
-What causes systems to congregate people together in
sheltered settings, instead of in generic ones with nondisabled peers?
-Why do we settle for so many shortfalls?
-What are we waiting for to ensure systems are
accountable to cost effective outcomes?
Bill’s Take and Other
• Why is it that systems fall short in helping people get
jobs, find homes of their own, and secure
community ties?
• What could systems do to change this or is the
problem bigger than what systems can reasonably
achieve?
Causation Summary
• Generation’s focus on liberating people from institutional
oppression and creating a specialized infrastructure to
secure health and safety in the community
• Increasing number of complex administrative controls
that are not community inspired, friendly, or even linked
• Assumption that state and agency operated human
service systems, despite their drawbacks, are necessary for
maintaining appropriate standards
• Lingering public perception that castes people with
disability as rightfully apart from the mainstream
community
Imagining: Bill’s Take and
Others
• When you imagine life as you want it to be for
yourself, what do you imagine?
• How do you contribute toward making that type of
life come true?
• Who works with you on making your dreams and
aspirations come true?
• What have system workers contributed to making
your life better in ways you want your life to be?
Imagining Better Ways:
Create Safe Space
Don’t assume that:
•
A qualified professional has to develop a plan of care, coordinate services, or monitor utilization
•
Community based services are adequate because they are better than institutions, run by leaders
with good values.
•
Community resources are unable to accommodate a person’s disability without oversight by
professionals and specialized providers, or that use of a generic resources like an employer could
not be more effective without system controls
•
Specialized organizations need to own service settings, employ workers, manage programs, and
control how resources are spent
•
A friend, advocate, coworker, family member, or neighbor cannot provide paid employment or
other support
•
Specialized services are somehow safer, better, easier, or more cost effective than community
resources that accommodate to their customers, employees, and public
Imagining:
Set Everyday Parameters
• Accountability To Everyday Outcomes (Step out of
caregiving framework to one focused on securing a
home, job and community ties)
• Community Resources Used First and Foremost to
Achieve Outcomes. (Step out of system controlled
environments to community experiences where
people are appropriately matched)
• People and their Community Resources With
Control of Resources. (Step out of funding and
decisions made by specialized agencies)
Imagining: Sub-In Community
Corollaries
Use administrative community resources like banks,
city inspectors, civic organizations, independent
monitors, generic depts., and citizen advocates for
administrative work
Use a family member, spouse, colleague, advocate,
NGOs for functions done in the system by case
managers, monitors, agency staff, and government
Redirect service funding from administrative entities to
restricted accounts managed by people and the
resources that support them.
Imagining: Take Direction
• For decision makers, put yourself in people’s shoes
• Imagine support on a scale that embraces
community resources
• Look at what non-disabled populations have done to
assimilate
• Find room to stay human and stay open to new
ideas
• Let the chips fall
What Imagining Means For
Employment
Paying employers directly based on the extent of their
accommodation and support network
Giving employers and people the responsibility to
decide on engaging specialized providers of service
Trashing “pre” paradigms, and system practices like
plans of care that merely legitimize care-giving ways
Affording people the dignity of self-identifying for
accommodation and support outside of disability
Bill’s Take and Others
Given what you know about how funds for your
services have been used, how would you change things
if you had more control and could call the shots?
What would you say to people who suggest that trained
professionals have the right to manage your life
decisions because they have the money?
Do you think that people and families become
dependent on systems and how can this be changed?
Characteristics of Community
Frameworks
• Utilize existing community resources, like banks, city
inspectors, civic organizations, and business sponsors, to
ensure that support is appropriately administered
• Build on what individuals, families, friends and
communities do in securing living arrangements,
employment, and community ties
• Apply support as an accommodation to achieve an
employment or other community outcome, not as a
specialized service
• Transfer authority, resources and control to people and
the community resources that support them
Breaking This Down: Values
and Reality
Value
Framework Reality
Self
Determination
Major life decisions controlled by people and the
community resources that support them
Inclusion or
Integration
No funding of sheltered programs that congregate
people together on the basis of their disability – WE
DON’T DO THAT ANYMORE
Choice
Everyone chooses how and where they live, work,
socialize, and use generic resources
Quality and
CostEffectiveness
Utilizing community means to achieve community
ends, no more clinical norms. All support based on
community norms, standards, and practices
Bill’s Take and Others
• Closing thoughts
• Thanks for sharing 