How the Shift to Individualize Supports Gets Stuck and The First Step Out of Gridlock
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INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 383–387 | OCTOBER 2011
How the Shift to Individualize Supports Gets Stuck and The First
Step Out of Gridlock
Hanns Meissner
DOI: 10.1352/1934-9556-49.5.383
Many mature and successful service providers decade—but the investments of state systems and
continue to find their identity in the heritage of the efforts of most service providers remain centered
moving people with developmental disabilities out in programs designed to place and manage people
of public institutions. Significant achievements with developmental disabilities in suitable groups.
such as providing residential alternatives to large Facilities and funding streams continue to dominate
facilities do not immune providers from criticism despite policy commitments to individualization.
emerging from a growing demand for individualized Frustration and the temptation to cynicism grow as
supports. The Individualized Supports Think Tank, advocates experience little movement toward what
a group of self-advocates, parents, and service they understand as individualized services. Service
providers convened by the Self-Advocacy Associ- providers continue to report little demand for change
ation of New York State (2007) expressed this (‘‘Our consumers and their families are highly
demand: satisfied with current services’’) and complain of a
thicket of fiscal and regulatory obstacles that
We define individualized supports as an array of supports,
services and resources that are person-centered, based on the
entangle their steps toward individualization. Policy
unique interests and needs of the person, afford the person as changes, strategic plan objectives, exhortation,
much control over their supports as they desire, and are training courses, and financial incentives have not
adaptable as the person’s life changes. This means that supports shifted the prevailing pattern. The move toward
are created around an individual’s distinct vision for their [sic] individualized services is stuck.
life rather than created around a facility or funding stream.
The roots of this gridlock lie in beliefs and
From this perspective, some would claim that assumptions about people with developmental dis-
the most dominant forms of accomplishments of abilities that are embodied in and reinforced by the
the era of deinstitutionalization look like mini- culture of the service system. The individualization
institutions that offer few and constricted options. that growing numbers of people with developmental
These options tend to consign people to full time disabilities and their families and allies call for is not
clienthood, where they are excessively controlled superficial and transactional, but deep and transfor-
by caregivers and are prevented from fully partic- mational. It is not a matter of dispassionately working
ipating in community life. As the full responsibility on redesigning structures, independent of the rela-
for the quality of people’s lives continues to be tionships, practices, emotions, and mental models of
delegated to service providers by families, commu- the managers, professionals, families, and people with
nities, and generic services, the growing demand for developmental disabilities creating the change. It is a
long-term supports challenges the sustainability of matter of opening up space for innovation in a
developmental disability systems. culture that includes those who want to make room
The argument that typical service providers are for new arrangements by surfacing their assumptions
caught in a pattern of ‘‘strengths becoming weak- about what is possible for people with intellectual
nesses’’ in the face of shifting service expectations disability both in terms of their capacity for an
becomes more salient as sophisticated service systems inclusive life and options to support new outcomes.
experience great difficulty in implementing individ- One good move when stuck is to find a way to
ualized supports. There have been modifications in describe the mental models in play. This process
language and procedure—most everything has been begins with engaging in a dialog about the various
labeled as ‘‘person-centered’’ for more than a beliefs and assumptions that shape perception of
’American Association on Intellectual and Developmental Disabilities 383INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 383–387 | OCTOBER 2011
Perspective: Individualizing supports H. Meissner
people with developmental disabilities themselves, adopting individualized services is like replacing
as the following example of contrasting mental one’s mobile phone with a smartphone. The old is
models illustrates. If we see people with develop- discarded; the new adopted. Change is a matter of
mental disabilities as fundamentally vulnerable and marketing a new product by convincing people that
incapable, the role of service providers is to take the gain outweighs the pain of change or that the
care, protect, and decide for people and the role of cost of resisting the command to change is higher
service systems is to create rules, incentives, and than the cost of changing. A more powerful image
mechanisms of inspection and enforcement that views the field of developmental disabilities servic-
assure safety and adequate care. On the other hand, es as being like a natural ecosystem, with many
if we see people with developmental disabilities as different life forms existing and evolving simulta-
capable of contributing meaningfully to community neously. Some are dying out as their niche shrinks,
life, the service provider is one partner in others mobilize most of the available resources as
discovering and offering the individualized sup- they pass through their adaptive peak, still others
ports, interest-based opportunities, and safeguards are experiments of life that make the most of ca-
that enhance participation, satisfaction, and resil- pacities unused by the dominant forms or released
ience. The service system holds responsibility for by what is dying.
investing public funds that are sufficient and Table 1 sketches a map of the developmental
flexible to sustain individualized supports, develop- disabilities ecosystem that offers people who want
ing an adequate supply of capable and ethical to develop individualized services a way to locate
service providers, and offering an additional level of their efforts and consider the multiple dimensions
safeguards to people’s autonomy and community of necessary change. It identifies a succession of
membership. four different forms of service, all of which are
currently sharing the field.
These distinct mental models justify profound-
Though the legitimacy of institutional care is
ly different service systems and shape almost
declining and its sustainability is in grave doubt,
incommensurable understandings of key ideas like
the transfer of institutional structures, practices,
person-centered work and individualized services. and assumptions into many local service settings
Trying to simply overlay structures and practices makes it still the dominant form. Managed care is
intended to offer individualized support for com- also strong and, in most places, integrative supports
munity contribution on a system shaped by beliefs and community supports are just emerging at the
that persons with intellectual disability are exclu- innovative edges of the field.
sively vulnerable and incompetent will get mired in Institutional care is system-centered, with
more of the same. So will change strategies based provider organizations and state systems delegated
on the notion that shifting paradigms of under- full responsibility for meeting every officially
standing is as simple as jumping from one state to defined need in service models for diagnostic
another on command. What is necessary is the kind groups and plans for individuals designed and
of purposeful listening relationships that encourage directed by professional experts. People with dis-
awareness and suspension of the assumptions and abilities and their families are passive clients. The
beliefs that reinforce gridlock and the exploration system is hierarchical and operates through com-
of an understanding more aligned with the purpose mand and control, reflecting the dynamics of
of developing individualized supports. Such rela- power-over relationships. Its infrastructure is found-
tionships become a springboard for prototyping new ed on legal requirements that are specified and
ways to partner and provide supports that can form monitored in detail with a strong aversion to any
and flourish if there is a supporting environment potential risk. These requirements and the compli-
(Scharmer, 2009; Mount & VanEck, in press). ance sensibility that pervades institutional care
Not only do mental models shape our sense arise in reaction to the abuse and neglect that
of what is desirable and possible for people with people with developmental disabilities are vulner-
developmental disabilities, we also are strongly able to and the possibilities for real or perceived
influenced by the way we make sense of change. misuse of public funds. Decision-makers are sensi-
Some understand change as the straightforward tized to deficiencies in people with developmental
replacement of one way of doing things by an- disabilities, service providers, and ordinary citizens.
other better one. Given this definition of change, The system manages very high levels of detail
384 ’American Association on Intellectual and Developmental DisabilitiesINTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 383–387 | OCTOBER 2011
Perspective: Individualizing supports H. Meissner
Table 1 Evolution of Developmental Disabilities Services
Organizing citizen-
centered principle System-centered Outcome-centered Person-centered Citizen-centered
Individual resource- Expert–patient Provider–consumer Facilitator–broker Resource-
professional (professional (professional (professional autonomous–
relationship direction) responding) facilitating) citizen
(professional-
ancillary)
Service-individual Functionally Habilitation Wrap-around In-home and
interface specified pathways Supports person- community
services and (core process) driven located supports
models Service-driven (negotiated) Community-driven
Model-driven (pull) (push) (allocated)
Innovation Administrative and Outcome-driven, Person-centered Citizen-centered
mechanism functional cross-functional, interorganizational community-
effectiveness and inter- State and co-create based
efficiencies organizational personalized Support individual
internal to the Deliver customized experiences citizen automony
system services
Make standardized
service models
Dominant type of Many details to Complex interaction Complex interaction Unclear and
complexity manage between between key emerging futures
environmental stakeholders
factors
Coordination Hierarchy and Market price Network, dialogue, Seeing from the
mechanism command and mutual whole
adaptation community
Infrastructure Social legislation Rules, norms to Infrastructure for Infrastructure for
(laws, make the market learning and seeing in the
regulations, place work innovation context of the
budget) whole
Primary outcomes Placement, Face to face Individualized Citizenship and
and emergent personal care services, residential supports leading valued roles
outcomes for activity, and living community to jobs, home,
individuals housing presence and relationship
complexity in assuring compliance in order to contracts with the state system and referrals from a
deliver placement in day service settings and group service coordination system charged with making
residences, personal care, and activity. and monitoring Individual Service Plans (ISPs) that
Managed care is outcome-centered and de- reflect people’s needs for support. People with devel-
signed to provide the system with the means to opmental disabilities and their families are often
control costs by implementing cost-effective pathways seen as customers to be satisfied by the offerings and
to habilitative results. Framed by a waiver from some efforts of service providers. Though they are often
institutional requirements negotiated between state called consumers, people or their guardians do not
and federal Medicaid agencies, the system becomes a have control of funds. Money is allocated through a
sort of marketplace, with multiple providers seeking complex political bureaucratic process of rate setting
’American Association on Intellectual and Developmental Disabilities 385INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 383–387 | OCTOBER 2011
Perspective: Individualizing supports H. Meissner
that, along with regulation and inspection, are the maintaining dialog that allows continuing mutual
primary means to coordinating and managing the adjustment with the people they rely on for
system. Service providers often work hard to influence assistance. Service providers act as suppliers of
the norms and practices that govern their market- trustworthy assistants, brokers, facilitators, and
place. There is potential flexibility to respond to partners in innovative ventures. They stretch
individual difference, but provider organizations themselves to include more and more people with
and state systems remain the holders of delegated complex needs and difficult circumstances. The state
responsibility to assure compliance with regulations system’s role is to assure fair and adequate funds for
intended to keep people healthy, safe, and moving necessary assistance, actively promote learning and
toward agreed goals. The system allocates many of its innovation, and safeguard those people and families
costs through billable units of face-to-face contacts, who are isolated and vulnerable until they can find
so, in a sense, such contact is an outcome of managed the connections they require.
care avidly tracked by service providers. A generation These innovative forms of support differ
of small group residences and day programs that primarily in their horizon of action. Integrative
support people’s presence in community settings have supports are focused on the proximate desires of
come into being with managed care funding, though more and more people with developmental disabil-
innovation is typically the design and implementa- ities to live a real life. When people with devel-
tion of a revised program model rather than ar- opmental disabilities have the experience of others
rangements tailored to individual circumstances. listening to them respectfully, living a real life
Institutional care and managed care display means having a place to call home, an intimate
considerable continuity, but a major shift separates relationship, friends, and a real job. In the current
them from the innovative edges of the field: service ecology, achieving these ordinary human
integrative supports and community supports. desires calls for a great deal of skillful partnership in
These two pairs of approaches to support are as innovation and negotiation to mobilize disability
different from each other as a manual typewriter system funds and build productive connections with
and a new laptop in terms of function, design, other local assets, such as housing providers and
capacity, and mode of production. employers.
Integrative supports and community supports Community supports assist people to hold even
both require a re-ordering of relationships with wider aspirations than living a real life. Service
and around people who have developmental dis- workers develop their capacities to act as a resource
abilities and their family. These relationships are to people’s exploration of their contributions as
based on a fundamental shift to power with a citizens to building stronger neighborhoods, associ-
committed group of people with differing assets. ations, congregations, and a more inclusive and
They bring to the task of supporting people with sustainable local economy, polity, and environ-
developmental disabilities the pulling together of ment. Innovation focuses on supporting people to
many assets necessary to have a flourishing life. take up valued and contributing social roles in a
Mindful effort to discover and build on a sense of greater variety of settings.
the person’s developing capacities and autonomy These shifts may reflect yet another evolution
guides the work, which is rooted in the values of of how we view persons with developmental
democracy and the struggle by people with disabilities and their place in our world. This, in
disabilities for human and civil rights and recogni- turn, has an impact on how the system and
tion that continuing learning and innovation are providers of service respond to this emerging social
essential. The need for competent assistance and dynamic. How to encourage the emergence of new
a variety of safeguards is negotiated on a person-by- service paradigms without engaging in a never-
person, situation-by-situation through deliberation ending dance of competing commitments is the
rather than assigned to simple conformity with ex- core question for those who seek an inclusive life
ternal rules. Individuals with developmental dis- for persons with intellectual disability. Teasing out
abilities and their family do not delegate complete and nurturing evolutionary thinking and doing is
responsibility to service providers. They build the task for transformational leaders in all sectors of
security and flexibility by extending and organizing our society (i.e., in families, in our neighborhoods
their personal networks, taking as much control and governmental sectors, and in business and
of system resources as circumstances allow, and nonprofit arenas). Promoting cultural change (i.e.,
386 ’American Association on Intellectual and Developmental DisabilitiesINTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 5: 383–387 | OCTOBER 2011
Perspective: Individualizing supports H. Meissner
shifting mental model) requires innovation that is invitation to engagement. The invitation goes out
socially focused. This is about innovating genera- to all key stakeholders to join in a journey of self
tive relationships, not discovering new tech- and system transformation. From a place of
nology. Social innovation calls for actions that profound appreciation and humility, safe social
ignite personal journeys of self-awareness, re- clearings and containers for dialogic inquiry, deep
aligning relationships away from hierarchy to learning, and innovative practice are created and
partnership, and transforming our communities nurtured. In doing this we are reordering our world
where difference and diversity is embraced. Al- away from fragmentation and delegation to com-
though social innovation can take place within any munity connections. There will be a need for new
sector, more than likely it will occur in the white power arrangements and organizational forms.
spaces between the family, local community, busi- Critical to this transformational process is finding
ness, nonprofit providers and government. When we added the leverage points for change by working
learn to move from our defined spaces and roles into within our present service structures, redesigning
a common community agenda, perhaps individual- traditional services to individualized supports, and/
ized supports will then become mainstream practice. or inventing new ways to support individuals with
A cultural change that supports persons with intellectual disability as true citizens of our
disabilities to assume full citizenship in our local communities.
communities and experience a real life requires the
morphing of deeply held beliefs about disability and
the roles and relationships at all levels (individual, References
team, organization, state, and nation) and sectors of
society (household, civic, government, profit, and Mount, B., & VanEck, S. (in press). Keys to life:
nonprofit) from ‘‘taking care of’’ to partnership with Creating customized homes for people with
people who have disabilities. As mental models disabilities using individualized supports. Toronto:
shift, a capacity to see the world from a different Inclusion Press. Self-Advocacy Association of
perspective is developed. From new perspectives, New York State.
new relationships among individuals, organizations, Individualized Supports Think Tank. (2007). Al-
and sectors in society are formed to create social bany, NY: Author. Retrieved from www.sanys.
innovations that ignite movement towards a more org/ISTTBrochureColorApril92007.pdf
progressive support model. Ultimately, cultural Scharmer, O. (2009). Theory U: Leading from the
change emerges from the ongoing interaction and future as it emerges. San Francisco: Berrett-
social negotiation that occurs among key commu- Koehler.
nity members during processes that enable innova-
tive support practices.
Committed change leaders with a vision of Author:
citizenship leading to lives of valued contribution Hanns Meissner, PhD (e-mail: HMeissner@renarc.
and involvement for persons with intellectual org), Executive Director, The Arc of Rensselaer
disabilities can start the change process with an County, 79 102nd St., Troy, NY 12180.
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