Surviving Cogworld?

Supporting People with Developmental Disabilities

In a Mechanistic System
John OBrien

DD

etwork

DD

etwork

www.ddnetworkinc.org
PO Box 8335
Madison, WI 53708-8335

This paper was commissioned by a Wisconsin network

and is anchored in my view of the development of services in that state but it may have application in other
places.

The mission of the Developmental Disabilities Network is to

inspire, inform, and point the way
to best practice of daily support
for people with developmental
disabilities and to promote greater opportunities for people with
developmental disabilities to:

I highlight interlocking trends in managing our system of

assistance for people with developmental disabilities that
worry me deeply. The extent to which I am troubled shows
in the argumentative tone of the paper, which is written as
a position to initiate debate.

Contribute to community life

Control their own lives
Secure good health and a
stable home
Work and earn an income
Learn and grow

Version 1
9 February 2015

I am arguing against trends produced by the whole long

term-care system. The managers who accelerate these
trends are responding to demands shaped by the whole
system, which includes me, people with developmental
disabilities and their families and advocates as well as
a political system that is unable to engage the adaptive
challenges posed by growing numbers of people who
require long terms assistance and a society in flight from
difference and interdependence. It is not a matter of fixing
blame on a few interfering bureaucrats or politicians with a
hostile agenda but of all of us assuming responsibility for
establishing a balance of relationship and transaction that
will sustain good support.
I think part of the trouble comes from a way to think about
personal assistance whose consequences have come
to seem inevitable. The made-up word cogworld is a
device to make a taken for granted mindset odd enough
to discuss.

This work is licensed under a Creative

Commons AttributionShareAlike 3.0
Unported License.
John OBrien
Image on page 5 1999 Beth Mount. Used
by permisision. www.capacityworks2.com

This paper ends with questions. I have no solution

to the difficulties I identify other than the invitation to
join in figuring out how to make progress in a troubled environment.

Good Support is built on good relationships

Good relationships form the foundation of good support
for people with developmental disabilities and their families. Policies and organizational practices that recognize
this will be effective at offering support for good lives.
People with developmental disabilities who live good lives
speak about the importance of good relationships with at
least some of the paid people who assist them. They
often choose words that reflect close relationships
friend, like family to describe their relationship
with some assistants.
Mary Beth has been with me 20 years. I dont think I would
be where I am without Mary Beth. She has been with me
the longest. Regardless of the ups and downs with the
whole thing, shes there for me. Always. She helps me the
best she can. She gets me to Special Olympics. Shes just
Cindy

like a family member shes my family some of my family.

People who provide good direct support and stick

with people with developmental disabilities speak of
themselves in a mutual relationship with those they
assist. They not only provide assistance for the persons growth, they learn and grow themselves.
I had never been around someone like Rebecca who wasnt
able to respond to me in words. Someone who physically
couldnt move in a way that would show me her interests
or passions for things. So it was a real learning process for

Anna

me. I didnt know what to expect.

I think at the time I very much felt like I was doing Rebecca
a favor, that I was helping her. Ive come to see that its
Rebecca who has pushed me on to do all the things that
we have done together. She encourages me to be a better
person in everything that I do. So even when were not
together her presence is with me and I bring that to each
encounter that I have.

Rebecca

Good support workers understand what matters to

the person they support and feel proud of amplifying the
persons voice at times when that is important.
3

[The doctor] said, I think its time to look at assisted living

for Donald. Hes 80 years old. Hes had a few falls.
And I told the doctor, Im going to tell you what Donald just
said to your nurse. She asked him if he had any children.
Donald said, Not yet. His glass is still half full.
The doctor laughed and said, Well talk about this.
So he agreed, well do whatever we can to have Donald
Bonnie

[continue to] live in his own home.

Donald

People with developmental disabilities need assistance with everyday matters. Some people need assistance to eat and get dressed and get around. Some
people need assistance with self-regulation when
anxiety could take over. Some people need assistance
with keeping their home and work life together. Good
support is more than just doing tasks a person needs
done. It is providing assistance in a relationship that
recognizes a whole person, respects that persons
dignity and encourages that person to live a good life.
Good support relationships have purpose that reach beyond the relationship. In collaboration with the person they
create everyday opportunities for the valued experiences
that characterize a good life
belonging to the circles of personal relationship in
which people enjoy and encourage one another.
respect that comes from occupying valued social roles:
worker, good neighbor, member.
sharing the ordinary places and activities of a communitys life.
contributing by developing and offering personal
gifts and capacities in ways that make a difference to
others.
choosing: expressing preferences and making decisions

Providing assistance is a job, usually funded with Medicaid money. Those who take the job agree to the terms of a
transaction: agreed hours worked at a specific rate of pay
(and sometimes other benefits); willingness to be guided
by a plan and document its implementation; consent to
follow policies and procedures. If assistance is simply a
transaction with a capable person, people with developmental disabilities get authorized tasks done. If the person
performing the task is respectful and friendly, the transaction will be pleasant. When competent assistance comes
in the form of a good relationship, it becomes support for
a good life.

Effective organizations invest in good relationships

Good support is not an accident and it cannot be bought
for money. Good support engages whole people in each
others lives. It calls on the capacities of peoples hearts,
their practical thinking and their capacities for action.
Organizations* that want people with developmental disabilities to have valued experiences invest in creating the
conditions for good relationships to develop.
beth

A good match. The more complex it is to build a relationship with a person with a developmental disability and
their family, the more important it is to think about who
will make the best fit. In general, the more influence the
person and family have over the choice the better the
chances of a good match.
Time for relationship. Good support workers see themselves as playing a supporting role in a persons life story.
Support workers need time with the person and those
who know the person to learn the story and figure out
how they can support the person as they author their next
* As self-directed budgets become available, more people with developmental disabilities and their families are organizing supports for
one person. These conditions are as important for these organizations
for one as for those that assist large numbers.
For a checklist of things to think about when matching people, see
David Pitonyak & John OBrien. Matching Staff. www.dimagine.com/
Matching.pdf

chapter. They need the chance to become familiar with the

daily rituals and cultural practices that are important to people and their families. They need to share time and experiences with the person to learn who they are and invite their
trust by making and reliably keeping agreements. The more
discouragement and trauma a person has experienced in
past relationships, the more important this time is.
Flexibility. Support for a good life means moving with people like an ice dancing partner. There are ups and downs
and risks. There are periods of discovery that involve trying new things in new places. There are occasions when
a person needs more support or less support. Mutual
agreements that allow adjustments to what, when, where
and how much assistance a support worker provides build
strong relationships.
Opportunities to learn. The heart of good support is
skillful assistance. Some of this is direct responding well
when PTSD interrupts. Some of it involves negotiating
the accommodation a person needs to be successful at
something she wants to do modifying a job procedure so
a person can be successful at work. Much of this learning
comes with guided practice, some from consultation with
experts, some from more formal study.
Opportunities to reflect and deepen understanding.
Transactions are regulated by policies and procedures and
schedules. When these are skillfully crafted and wisely
administered they coordinate activities, provide boundaries that reduce the chances that things will go wrong
and offer some protection if they do. Its another matter to
develop capacities to live a good life. Good support is a
co-creative relationship guided by a shared understanding of what is important to and important for the person, a
shared vision of a good life, and an understanding of the
values that make it possible for people with developmental
disabilities to resist the social forces that limit their full participation in community life. This calls for regular chances
to reflect and plan.
6

Good ways to deal with personal conflicts. Support relationships can be complex and personal boundaries can
need adjusting. There are times of stress and heightened
emotion that strain relationships to the point of breakdown. What matters to and for the person takes priority,
but a good relationship also takes account of what the
support worker needs to be at their best. The purpose is
to assist a person to live a good life but there can be conflicts between a person and family members about what
a good life is for example, how much risk is acceptable
in a particular situation. Its important to respect choice,
but what if a persons choice seems morally wrong to the
support worker? Sometimes trust breaks down. Good
relationships sometimes need mediation.

A changing environment squeezes investments in good relationships

Between 1977 and 2011* US Federal investment in longterm care for people with developmental disabilities grew
significantly. The number of people with developmental
disabilities who count on Medicaid increased by more
than 60% and the balance of investment shifted from
institutional settings (funded as ICFs/DD) to local service
seatings (funded by Home and Community Based Services Waivers). Typical numbers of people living together
in residential services shifted to groups of six or fewer.
Until around the turn of the century, state systems and
services funded by HCBS waivers could largely manage
their own approaches to assisting people. There were limits on the amount of public money available. There were
regulations to comply with and plans and reports to file.
There were limits on the number of eligible people who
could receive services. There was significant variation
across systems in the way services were designed and
offered and the extent to which people were institutionalized. This was especially the case in Wisconsin, where
County government held primary responsibility for orga* See State of the States in Developmental Disabilities. www.stateofthestates.org

nizing and managing human services. But the DD system

and its providers had considerable autonomy within these
limits.
The families of people with developmental disabilities were
well organized politically. The field was energized by the
work of deinstitutionalization, and special education, and
new approaches to the development of young children
with disabilities, and supporting adults at work. If system
managers wanted to they could usually maintain strong
boundaries around the DD system.
Most services were provided by non-profit organizations
which were typically locally focused and locally accountable, usually to boards with a specific interest in developmental disabilities. Only a few organizations were statewide in their reach. Service planners became adept at
supplementing HCBS rates with other resources, including
Medicaid Personal Care and other Medicaid services.
Service managers who chose to could manage their organizational boundaries to support innovations in personally
tailored supports and investments in the conditions for
developing good relationships.
As the 2000s passed, the environment changed.
The federal Centers for Medicare and Medicaid Services (CMS) offered greater flexibility and attached more
conditions to HCBS waivers. The variation in services
across Wisconsin Counties was defined as producing
unacceptable inequity. CMS increased its demands
that the Department of Health Services be accountable
for statewide compliance with its required assurances.
State defined requirements for federally defined approaches to quality assurance, payments, safeguards,
assessment and individual planning have increased
markedly.
Advocates formed alliances to focus on reducing numbers of people waiting for services and county to county
variation in the extent and type of services available.
Eliminating waiting lists became a priority.
8

 In the mid-1990s Wisconsin became an early adopter

of what is now a national trend: the idea that long-term
supports should be funded and regulated through a
care-managed system with capitated rates. After pilot
efforts that began in 1999, this system has grown to
cover most of the state. It is designed to offer*
entitlement to a variety of long-term care service for
those eligible: no more waiting lists.
a tailor-made package of services designed to
meet [each eligible persons] unique needs and preferences.
funding that follows a person across service settings
and county lines.
a simpler system that offers greater choice, with
fewer cracks to fall through.
an affordable long-term care system.
The Federal Government has increased its effort to enforce the Americans with Disabilities Act, particularly as
interpreted by the US Supreme Court in the Olmstead
decision (1999). In some states the Department of Justice has heightened its scrutiny of the way services are
offered. In January of 2014, CMS issued rules defining
community based settings and specifying in detail the
form and process for person-centered planning.
Any public policy involves trade-offs among important
values. These environmental shifts are no exception.
There are advantages to people. Eligible people and families waiting for necessary services have felt immediate
relief. People continue to move out of nursing homes and
some elders who are admitted to residential services are
spending less time there because they stay at home longer. There are more options for people to self-direct their
assistance.

* Wisconsin Department of Health Services. Why people with developmental disabilities need family care. www.dhs.wisconsin.gov/familycare/history/whydd.htm

As the DD system loses autonomy, the balance tips*

Long Term
Care System
DD
System
c. 1990

DD
System

There are also risks to people with developmental disabilities and their families. These risks show up as system
wide changes tip the balance in favor of managing transactions and reduce the space for relationship. This will
shrink the numbers of people with good support for valued experiences to those whose families and friends have
the resources to provide whats necessary.

c. 2010

from:
Stronger system and organization boundaries
Flexibility with available funds
Capacity to invest in the conditions for good support
Greater possibilities to support
valued experiences

reflecting
seeing the whole
learning flexibility
good match time

analysis
compliance
standardization
interchangeability

Transaction

Relationship

to:

Bu

re
a
Va ucr
lu ati
es ze

Greater influence by funding &

regulatory bodies
Less flexibility with available
funds
Less capacity to invest in the
conditions for good support
Decreasing opportunities to
support valued experiences
Focus on relationship and support
for valued experiences has never been
universal or even widespread. The point
is that the current environment makes it
even harder to stick to an organizational
commitment to relationship.

reflecting
seeing the whole
learning flexibility
good match time

Relationship

10

C Cos
on t
tro
l

analysis
compliance
standardization
interchangeability

Transaction

Reaching for easy answers

The long-term care system is over-committed. There is
already a shortfall of money and people to provide assistance that will become acute as more and more people
become eligible. The system has made commitments to
control costs and produce values (such as employment) that are well beyond its current capacity to
deliver reliably at the scale of the whole system. The
political climate is unfavorable to serious and sufficient engagement with long-terms support issues.
The whole system is stressed and anxious and vulnerable to grabbing easy answers.*
Easy answers come from stories that frame issues as
purely technical. Getting the level of public investment
right is a matter of actuarial computation. Professionals
can assess need and agree on mutually satisfactory outcomes and services in a few hours of meetings conducted according to a manual. As I infer it, the technical story
about long-term care goes like this.
People need long-term care because they are incapable of
performing activities of daily living. Long term-care efficiently
and cost-effectively performs the specific tasks that people
have proved that they can not. These tasks are specified
in a plan that links objectively assessed incompetence to
procedures that are well defined for efficient performance.
Whenever possible long-term care is delivered in a persons
family home, especially when family members and friends can
provide unpaid assistance. As need becomes more intense
people move into specialized settings: assisted living, group
homes, nursing homes.

This story keeps people busy finding answers to important technical questions. How will people be assessed?
What level of incompetence makes a person eligible?
What human resources practices best recruit and retain
* This paper asks you to imagine that a whole system can have prevailing moods and emotions that affect the organizations and people that make up the system. Imagine that whole organizations can
respond to stress and anxiety a bit like people do.

11

direct support staff at near minimum wages? What is

the most efficient way to administer a bath? These are
good and necessary questions and an easy answer can
demand a lot of creative problem solving and managing.
What makes it easy is that it treats assistance as if it were
the product of a machine. Machines can be astonishingly
complex and beautifully functional (look at your smartphone), and best of all they can be engineered, manufactured, and marketed through well managed processes. They fit an attractive pattern of thinking: analyze the
system, define the problem, develop options, choose the
most cost effective, deliver the solution, continually refine
and improve.
For shorthand, call this story of assistance to people with developmental disabilities after the gears that mesh in a beautifully engineered machine. Call it a story of cogworld.
In uncertain times Cogworld can be an appealing place
for managers and policy makers to hang out. The facing page identifies some of the perceptions that lead the
system to fear a tsunami of demand for long-term care
among elders and reinforce the attraction of the cogworld
story.* Political controversy over the growing claims of the
Baby Boom generation on social security and healthcare
has made long term-care for elders the focus of efforts to
redesign long-term care. The assumption is that long-term
care is long-term care; what works for elders will work for
people with developmental disabilities. In practice that is
a shaky assumption because the cogworld story of longterm care, which might make sense for elders, is a poor fit
with supporting good lives for people with developmental
disabilities.
Imagining support as the uniform outcome of a well engineered production system creates an expectation of
* These charts are based on information from Congressional Budget Office (2013). Rising demand for long-term services and supports for elderly people. www.cbo.gov/sites/default/files/44363-LTC.
pdf and Robert Wood Johnson Foundation (2014). Long-term care:
What are the issues? www.rwjf.org/content/dam/farm/reports/issue_
briefs/2014/rwjf410654

12

A lot more people will need services!

Its going to cost a lot

Peoples families have to come through

Its going to take a lot more of the workforce

but there will be many fewer of them

Politically, were stuck

13

control and managed efficiency. This underwrites two

influences that reduce capacity to develop and sustain
good support relationships and tip the balance toward
managing transactions. These influences are: mechanistic strategies for managing scarcity and
the bureaucratization of values through
regulation.
Cost control. From the point of view
of assistance for elders there are a
number of sensible ways to control the rate of growth for
long-term care costs. Nursing home costs are high and
growing. More and more elders see out of home placement as a last resort and want to avoid it. Advising people
to plan ahead for long term care needs, tightly controlling
eligibility for public funds, encouraging family members to
provide as much unpaid help as possible and connecting
with community resources reduces demand for publicly
funded long-term care. Assuring early and coordinated access to health care, providing targeted in home assistance
with daily living tasks delays utilization of more costly
settings. Guiding people to a continuum of residential care
options affordable assisted living and group homes- defers admission to high cost nursing homes.
There is room for argument about each of these elements.
What level of incompetence, impecuniosity or isolation will
qualify people for publicly funded assistance? How much
should families be expected to contribute and what if they
refuse? Will limits on the extent of support people can get
at home push people into nursing homes? But overall, they
might be a foundation for assistance acceptable to elders.
Within this strategy, a cogworld approach to cost control
demands for efficiency at the price of flexibility by driving
the system toward
assuring eligibility and justifying allocations by establishing objective, standard measures and regularly
subjecting people to repeat administration of them by
trained and tested screeners.
14

 plans that define assistance primarily by a tight link

between assessed incompetence and highly delineated
tasks and protocols.
controlling self-directed budgets by imposing detailed
specification and monitoring of allowable expenditures.
defining assistance tasks in detail, restricting the places
where they can be performed and requiring standard
performance, sometimes including time specifications.
assuming that it is efficient to regularly demand lower
prices for assistance and that tasks can be performed
interchangeably by any provider or assistant that is
willing and qualified according to system management
criteria; continuity of care means continuity of task performance, not continuity of relationship.
allocating costs to tasks in small increments and demanding detailed reporting so that costs can be analyzed.
tying reimbursement to direct, face-to-face contact
without building adequate investment in training, supervision and development into the rate.
imposing (de-facto) caps and other conditions on direct
support wages or costs of administering increasing
requirements.
proscribing expenditures, for example on communication or mobility devices, and demanding extensive
justification for exceptions.
rigorous and repeated auditing by different authorities
of compliance with detailed requirements for documentation.
favoring the assumption that fewer, larger organizations can deliver equivalent services more cheaply than
smaller more local ones (economy of scale).
These measures are justified with the mantra that the system must be accountable to the taxpayer. This reasonable
idea becomes a problem when it stops discussion rather
than beginning an inquiry into what taxpayers actually
want from their long-term care system. While it may be
15

that a majority votes against increased taxes overall, those

are not necessarily votes against increased investment in
long term care or in favor of entangling recipients of long
term care in a skein of red tape that, in itself, drives up the
cost of care.
It has become increasingly common to assume* that a
managed market in long-term care offers the best alternative for funding services. States shift risk and responsibility
for compliance with assurances of quality) to economically motivated care management entities. A capitated rate
set by actuaries experienced in health care creates the
conditions of risk and reward necessary to drive continual
improvements in efficiency. Service providers gain an advantage by belonging to a managed network and compete
to assist eligible people based on organizational capacity
to deliver services deemed cost-effective and comply with
applicable rules.
The trend to contain Medicaid costs by rolling together
management of primary and acute care with long term
care and manage it under a single rate seems unlikely to
correct the balance of transaction and relationship.

The issue we confront in human services

is one of fundamental human values
freedom and community. Yet, our hopes
and plans for securing these values for
everyone are invested in government
agencies and public laws, in an
approach that codifies and mechanizes
the delivery of values. In holding to our
hopes, we have seriously overestimated
the power of bureaucracy.

Burton Blatt

* (1981). Bureaucratizing values. In

J Joffe & G. Albee (Eds.). Prevention
through political action and social
change. Hanover, NH: University Press
of New England, p. 38.

16

Bureaucratization of values. Cogworld is a confident

place. In that world, where more and more public officials
take up residence while they are at work, well established
practices of management command and control will efficiently produce any value and there are few if any conflicts
or trade-offs among values. Those who think in cogworld
terms have no trouble promising the simultaneous production of many valued qualities while containing costs.
There will be no waiting for services.
People will be healthy and safe.
* The efficiency of a managed market in long-term care has become
an article of faith, especially among those ideologically committed
to markets and shrinking the state. However it remains to be tested
over time and at a large scale. It has proven tricky for several MCOs
to manage the financial risk involved in a way that allows them to
continue in business. Many details such as rate setting remain to be
perfected. As well, effects on such important public policy goals as
support for employment for people with substantial disabilities have
yet to be fully evaluated.

 There will be equity: people with similar eligible incompetencies will have access to equivalent types and
quality of service regardless of where they live.
Assistance will be person-centered and delivered in accordance with a person-centered plan that reflects the
persons preferred outcomes.
People will benefit from natural supports (cogworld
speak for unpaid personal assistance from family and
friends).
People will have the option to self-direct their assistance.
Values are bureaucratized when a systems management controls their definition and implements measures
to assure their production. In cogworld, values can be
produced like the customer delights scripted by Disneys
park experience designers. The means of value production include
defining the value in a rule, mandating compliance and
seeking quantitative measures (If you cant measure it,
you cant manage it) .
contractually requiring policies and procedures that
specify in detail how staff will construct values regardless of situational and individual differences.
requiring training in how to comply with rules and regulations.
calling for documentation and data that demonstrate
compliance (If it isnt documented correctly, it didnt
happen).
inspecting to check compliance.
requiring correction in cases of non-compliance.
threatening to impose fines for non-compliance and
making payments or license to operate contingent on
compliance.
Advocates encourage the bureaucratization of values
when they are successful at persuading legislators, judges and funding authorities to require the production of
17

values like most integrated, least restrictive settings or

person-centered services.

analysis
compliance
standardization
interchangeability

Transaction

Negative effects. A cogworld approach to managing costs

and manufacturing values increases transaction costs.
Increasing amounts of time and money go into activities
like internal checking and rechecking to assure that billing
codes will be read as correct and required documentation
will pass external inspection. The point at which increased
expenditure on compliance ceases to benefit people is
easy for cogworld to overshoot.
Cogworld promises can damage the resources necessary
for collaboration. Because the system defines the values it
promises to manufacture, conflicts can develop. A person
who understands the promise of no waiting for services
as finally, I can move out of my parents home and get the
assistance I need to live in my own place will be puzzled
if the people charged with developing her person-centered
plan parse this into long term care needs and outcomes
and wants and personal outcomes and then guide her to
the service their system has decided is the cost-effective
way to meet her long term care outcomes: staying in her
parental home. This provides a sobering lesson in who defines the boundaries of expectation are and who controls
the means to implement ones choices.
Cogworld has a powerful influence on the quality of attention that people with developmental disabilities experience
from the people they rely on for assistance. Values and
goals are defined externally, in the systems terms and
through system prescribed processes. The systems voice
is not just one important influence, it dominates others
by absorbing the often messy and conflicted concerns
of fragile, fallible and magnificent humans and reframing
them as outcomes the system can produce technically to
standards the system can impose and enforce.
Values, including best use of public funds, become a matter of compliance. This effectively promotes compliance
to top value. It is harder to struggle for a deeper practical

18

understanding of standards like least restrictive, most integrated alternative, when the system demands attention
to compliance with the states CMS approved definition of
a community based setting. There is less energy for taking
the challenge of learning with a person how to increase
their capacity for self-regulation and personally meaningful activity when the system will impose punishment if the
persons file lacks a Behavior Plan documented in the prescribed format. When failure to completely answer all of
these compliance questions brings the additional bureaucratic work of producing and reporting on plans of correction, attention shifts even farther away from collaborative
work with real people.
The dominance of extrinsic motivation makes Cogworld
a demoralizing place to work for people who are intrinsically motived by meeting the challenges of relationships
that strive for equality and support peoples striving for a
good life. Cogworlds engineers acknowledge what they
call the workforce problem. Diminished political imagination frames the solution as treating workers like low
skilled, interchangeable parts in a machine that cranks out
tasks done to spec. The resulting care machine counts on
economically motivated managers to assure quality performance at an affordable cost without very significantly
increasing wages and benefits. This technical fix heavily
discounts the commitment to relationship that the best
direct support and professional workers have brought to
their work. It leaves committed people feeling that they
are becoming someone they did not want to be when they
chose to work with people with developmental disabilities.
Those who are committed may keep absorbing demands
that offer no real benefit for the sake of their relationships,
but this seems exploitive and unsustainable.
Cogworld is hungry for stories that justify more rules. Stories about misuse of funds, often retailed like ghost stories to entertain cub scouts, preoccupy the system with
finding fraud an enterprise made easier by combining
19

rigid and detailed expenditure controls with counting reporting errors as fraud. System managers accumulate requirements on the assumption that compliance serves positive
values and can be digested by providers without reducing
the quality of their assistance. Often this assumption is accompanied by another: that no additional funds are required
to meet the costs of compliance. In a market controlled by
a single purchaser, its difficult to pass costs of compliance
back to the customer as long as another provider is available to assist people more cheaply.
The logic of contracting tempts system managers to
abdicate responsibility for joining in solving problems and
developing innovations that demand high levels of collaboration and shared learning. In cogworld requiring performance in a contract is the same as solving a problem.

The danger of a single story

The cogworld story of long-term care and the cost management and the value production measures that flow
from it may fit the situation of elders reasonably well, I
leave it to them to comment. The cogworld story is gaining
in power and, as its influence grows, so does the clash of
stories. The cogworld story, which slips the system into
mechanistic answers, contrasts with a story of balance
that demands co-invention of ways to manage scarcity,
safeguard people and promote development that are adequate to the demands of the times.
The threat in the cogworld story is its tendency to drown out
more complex and interesting stories of good support. It appeals to a common desire to engineer technical solutions and
avoid the messiness and uncertainty of human beings adapting
to their frailty, interdependency and vulnerability in a world that
is changing rapidly and unpredictably. To keep cogworld from
colonizing peoples lives we need to live a story of balance.

20

The Cogworld Story

A Story of Balance

People need long-term care because they are

incapable of performing activities of daily living.
Long term-care efficiently and cost-effectively
performs the specific tasks that people have
proved that they can not. These tasks are
specified in a plan that links objectively assessed
incompetence to well defined procedures.
Whenever possible long-term care is delivered
in a persons family home, especially when
family members and friends can provide unpaid
assistance. As need becomes more intense
people move into specialized settings: assisted
living, group homes, nursing homes.

People with developmental disabilities require

life-long assistance in order to meet their
responsibilities and exercise their rights as citizens.
A personally tailored combination of technology,
accommodation, specialist service and personal
assistance enables them to develop and engage
their capacities. Each person and their family
and allies deserve a strong voice in the way
opportunities for a secure home, meaningful
relationships and contribution are discovered and
necessary assistance is designed and delivered.
Effective supports will be individualized, flexible
and oriented to active inclusion in community
life. The quality of support is founded on good
and growing relationships with the people who
offer it.

The story of balance recognizes three simple realities that

generate a variety of possibilities so complex that they can
only be addressed in the context of personally tailored supports.* First, people with developmental disabilities value
the same experiences as anyone else: good relationships,
the respect that comes from participating in valued social
roles, the chance to pursue personal interests in community life, opportunities to develop individual capacities and
make a contribution, and the freedom to establish a secure
home and do meaningful work. Second, more people with
developmental disabilities will have these experiences
when the tasks of assistance are capably performed by
people who are supported to develop and sustain good
relationships. This demands a dynamic balance of the relationship and transactional aspects of the work. Third, our
statements of what we value in assisting people with devel* Dane County, WI has developed a system with the capacity to
personalize supports and manage costs through a combination of
multiplying resources and allocating available funds through individual
budgets. For a current account of international innovations that provide alternatives to the most common implementations of managed
care see Simon Duffy, Traveling Hopefully: Best Practices in Self-Directed Support. http://goo.gl/Xvmjsj.

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opmental disabilities exceed what our system can reliably

deliver. We can only deliver on the promise of equal citizenship if growing numbers of people with disabilities and their
families join committed assistants to discover what works
for them as whole people in real places.
People with developmental disabilities and their families
know from history and experience the profound limitations
of living under the regime that the cogworld story imposes on them. They know that these bureaucratic simplifications are not the way to a good life as a contributing
citizen: definition of long-term care as primarily prosthetic
aid for incompetence in activities of daily living, assistance
restricted by narrow time, space and task boundaries
complex rituals of detail compliance with regulations and
eligibility requirements, long-term reliance on families as
primary providers of housing and assistance, inadequate
pay and support for direct support workers, and congregation of people into groups on the basis of clinical
assessment of need and managerial assumptions about
efficiency. They know that commitment and relationship
are fundamental to good support for a life a person has
good reasons to value living.
The developmental disability status recognizes a life-long
need for well organized assistance. It might be reasonable
to expect family members to assist an elder to stay in their
own family home for a few years with limited public investment. It is another matter to expect families to assume
primary responsibility for housing and assistance for 30 to
60 years. Many elders might be well served by carefully
bounded paid help with activities of daily living, especially
if it comes from reliable and courteous caregivers. Most
people with developmental disabilities benefit most from
relationships that offer good support for developmental
growth and contributing citizenship. Many disabled elders
have homes of their own and a rich history of playing a
variety of valued social roles. Many people with developmental disabilities need good support to establish and
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maintain themselves at home and in valued social roles

for the first time.
The assistance that people with developmental disabilities
require is effective to the degree that it is tailor made and
remade to fit each individual, developing person. Standardized services operated by interchangeable hands
for groups limit peoples potential and, typically, exclude
them from full participation in community life.

The challenge
Keeping space open for the further development of longterm support based on the story of balance that reflects
what people with developmental disabilities and their families and allies have achieved over the past 50 years is the
challenge for this generation.
The cogworld story of long-term care as a bundle of
transactions that cranks out values by following detailed
rules easily becomes self-sealing. The machinery of
cogworld lacks a reflective function to question the way
it effects people. Failure to reduce the rate of growth of
costs proves the need for more control and larger scale.
Errors in compliance demand more rules, more training,
more inspection.
One step toward meeting the challenge is for people to
make time to reflect and notice the growing imbalance
in our system. The tools of cogworld have enabled us to
dig ourselves into a deep hole. Change begins when we
notice this, stop digging and begin to co-create new ways
to approach scarcity and the creation of value.

Thanks Simon Duffy for the image.

Those of us who hold management responsibilities can

exercise continence. In a hierarchy there is pressure to
add an a just-in-case factor to interpretation of the requirements flowing downwards. State managers add extra requirements and restrictions to federal requirements
to decrease the chances of non-compliance. Service
organization managers repeat the pattern. By the time
policies reach those who are closest to people they have
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become unexplained and inexplicable restrictions that

people are told to do because unspecified woe will fall on
the non-compliant. A careful audit of what the rules actually require may loosen strictures and raise the possibility
of questioning policies that disadvantage people.
The conditions of demand that have drawn our system
into cogworld must be met. If we do not want to live in
cogworld we must invent new ways
to deal with demands for assistance that are very almost certain to rise faster than the rate of public investment.
to safeguard vulnerable people and strengthen their
voice and autonomy, including their capacity to take
responsibility for effectively directing their supports.
to honor and generously support the contributions that
families make through the life cycle.
to build and sustain an adequate number of good relationships to form the medium for good support for each
person.
to embed people with developmental disabilities in
community life by encouraging the arts of mutual accommodation.
to successfully advocate for a new social settlement for
long-term support that does not define developmental
disability as a medical condition or a deficit in ability to
perform activities of daily living but views publicly funded assistance as a necessary support for active citizenship.
People with developmental disabilities and their families
and allies have made real progress toward meeting each
of these demands.
Breaking out of cogworld and bringing relationship and
transaction into a healthy balance is the work of free, conscious people who choose to work together.
Progressive service providers and system managers have
found ways to survive that allow continued development.
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What is in doubt is how many of these social inventors will

have the free space necessary to continue to hold relationship and transaction in a productive tension. Holding
this space calls on us to face our social and cultural fear
of dependency in a creative way.

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