Strategies for Organizational Change

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Strategies for Organizational Change from Group Homes to
Individualized Supports
Pam Walker
Organizations are increasingly looking to convert from facility-based services for adults with
developmental disabilities to individualized supports. Such conversion involves not only a change
in services but a transformation of organizational culture. This qualitative study involved four
organizations that have made sustained efforts to transform. Although the approach taken by each
organization was unique, there were also some common strategies, which included generating
commitment to common values and mission, a turn or return to authentic person-centered
planning, shifting power and control, using community supports and relationships, moving away
from facility-based settings, and nurturing staff engagement. Ultimately, organizational change is an
ongoing process that requires organizational perseverance and commitment.
Key Words: supported living; organizational change; developmental disabilities; individualized supports
Since the 1980s, residential services in the field of
developmental disabilities have experienced a shift
toward more individualized, person-centered supports
(O’Brien, 1994; O’Brien & Lyle O’Brien, 1991;
Racino, Walker, O’Connor, & Taylor, 1993; Taylor,
Bogdan, & Racino, 1991; Walker & Salon, 1991).
Using the term supported living, O’Brien (1993)
articulated some of the differences associated with
this approach versus a traditional service system
Supported living expresses a fundamentally
different relationship to people with developmental disabilities than most other approaches
to service do: instead of controlling people
with disabilities in order to fix them, supported
living workers seek to cooperate with people
with disabilities in order to develop the
assistance they need to get on with their
own lives. (p. 1)
The purpose of this research was to identify
some of the strategies used by organizations as they
make this transformational shift from group homes
to individualized supports.
Some organizations fall into the trap of making
a surface change, such as changes in language or
service types, rather than authentic, transformational
change (Lyle O’Brien, O’Brien, & Mount, 1997;
O’Brien & Lyle O’Brien, 1998; Smull, 2000). Others
have engaged in efforts to create authentic organizational transformation that incorporates foundational,
cultural change across the organization (Fratangelo,
Olney, & Lehr, 2001; Fratangelo & Strully, 2002;
Hulgin, 1996; Jay Nolan Community Services, 2008;
Kendrick, 2009; Mount, 2010; O’Brien, 2008; Scott,
Hasbury, & Wykowski, 2010; Walker & Salon,
1991). O’Brien and Lyle O’Brien (1991) stated,
‘‘Making the shift to supported living involves more
than providing a different location or a different type
of service. The shift requires organizing and managing
systems and agencies in new ways. … In short, it calls
for a new way of thinking’’ (pp. 5, 12).
Literature on organizational leadership and
innovation has pointed to the importance of
generating shared values and commitment to
change, as well as the need for ongoing organizational
learning (Brady, Fong, Waninger, & Eidelman, 2009;
Kotter, 1996; Kouzes & Posner, 2007; Senge,
1990). In the field of developmental disabilities,
a substantial body of literature exists on organizational provision of individualized supports. This
literature highlights the need for separation of
housing and support (Racino et al., 1993), a
person-centered approach to supports (Mount,
1998; O’Brien & Lyle O’Brien, 1998, 2002; Smull,
2000), and supports that are creative and flexible
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P. Walker 403
and promote community connections and relationships (Bradley, Ashbaugh, & Blaney, 1994; Kendrick,
2008; O’Brien, 1993, 1994; Taylor et al., 1991).
Far less research has documented organizational
change from traditional supports to individualized
supports. The small amount of literature that does
exist has emphasized the need for broad-based changes
in organizational culture, shifts in staff roles and staff’s
relationships with the people they support, and
shifts in power and control (Dufresne & Laux, 1994;
Fratangelo, 2009; Fratangelo et al., 2001; Hulgin,
2004; Kendrick, 2009; Kiracofe, 1994; Meissner, 2011;
O’Brien & Lyle O’Brien, 1991). Most of this literature
was written in the 1990s, and only one study (Hulgin,
2004) was a qualitative research study. I identified no
other qualitative research studies that focused on
leadership and strategies for change in the field of
developmental disabilities.
Hulgin (2004) investigated the ability of
organizations to incorporate person-centered practices and found that organizational context (e.g.,
agency characteristics, images of people with disabilities, images of organizing, and approaches to policy)
was a key factor. My research builds on Hulgin’s work
in that I investigated organizations that have engaged
in efforts to shift their organizational context or
culture to facilitate the provision of individualized
supports. In the past few years, interest in organizational change has been growing, with an increasing
number of organizations seeking alternatives to large
group homes and intermediate care facilities for
people with mental retardation and expressing
interest in shared living and other similar forms of
community support (Mount, 2010; New York State
Association of Community and Residential Agencies, 2009; Scott et al., 2010). Thus, it is critically
important for the field to have further current
research-based work that documents the strategies
of, perspectives of, and lessons from administrators of
organizations that have engaged in efforts to
transform from facility-based supports to individualized, person-centered supports.
This study is based on qualitative research methods
(Taylor & Bogdan, 1998). A national search was
conducted to identify potential organizations; the
search included a request for nominations from
national consultants, university research centers,
national organizations, and national e-mail distribution lists. Nominations were solicited for
organizations that had achieved ‘‘significant transformation’’ away from facility-based services. From
among the nominations that were received, I
selected four organizations for this study. Selection
was made to learn about change from a diverse array
of organizations.
A 2-day site visit was made to each organization. For the site visits, an interview guide was
developed with open-ended questions; this interview guide helped ensure that the same general
areas were explored with each participant and
within each organization (Bogdan & Taylor, 1990;
Taylor & Bogdan, 1998). During the site visits,
interviews were conducted with 66 people (an
average of 16 per organization). Among those
interviewed were individuals who received support,
family members, direct support staff, and administrators so I could learn, from a variety of
perspectives and experiences, about organizational
change. I focus, in particular, on the perspectives
and experiences of administrators regarding strategies for organizational change. Thus, I draw
primarily on the interviews with the administrators
(21 total, or between 3 and 7 at each organization),
who included executive directors, associate directors, program directors, and associate program
directors. Organizational executive directors compiled the schedule of interviews, with attention to
including participants who had involvement in and
experience with the agency’s work on transformation. Interviews were conducted at the agency
offices. Most participants were interviewed individually, and a few were interviewed in small groups
(e.g., two to four participants together). Each
interview lasted between 1 and 2 hr. Interviews
were tape recorded and transcribed, yielding
approximately 15–25 pages of double-spaced notes
per participant. Questions covered issues such
as organizational history and background; what
prompted the agency transformation; description of
the organization’s evolution; and perspectives on
what the key strategies, lessons, and challenges
were. Within these broad categories, most of the
questions were open ended, providing opportunity
to elicit participants’ experiences and perspectives.
Data analysis was inductive, using the constant
comparative method (Glaser & Strauss, 1967;
Taylor & Bodgan, 1998) whereby data are simultaneously coded and analyzed. As a first step, the
data for each organization were read and coded
for themes. Next, potential themes for each
organization were compared with those of other
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404 Strategies for Organizational Change
organizations to identify common categories or
themes. Data across all four organizations and data
within each theme were reread and analyzed to
further develop these common themes. To help
ensure credibility, multiple people were interviewed
within each organization, providing diverse input
regarding key organizational strategies. Second, a
case study report on each organization was reviewed
by the organizational administrators to confirm that
critical issues had been captured.
Key Strategies for Change
The four organizations that were part of this study
were Residential Support Options (RSO), Community Living Alternatives (CLA), Riverside
Community Services (RCS), and Alternative
Community Supports (ACS; all names of organizations and individuals are pseudonyms). A brief
profile of each follows.
RSO provides residential supports to almost
2,000 individuals in a large urban area. RSO is
located in a state that promotes self-determination
and self-direction of services as part of state policy.
Beginning around 1995, RSO began a transformation of its services on the basis of the principles of
self-determination. Since that time, the number of
individuals in licensed group homes has decreased
from more than 1,200 to about 700; at the same
time, the number of individuals living in their own
homes has increased from 300 to almost 1,200.
People choose where they live, as well as the staff
who provide support. For example, Harry and
Eleanor met when they lived in an institution.
They were then transferred to different group
homes. With the assistance of RSO, they got
married and moved into their own apartment,
where they hire staff of their choice on a schedule
that they have determined. In the mid-1990s, RSO
was dominated by a clinical model of services with
128 clinicians on staff. Their transformation has
included moving away from such a large number of
clinicians on staff and, instead, contracting for
clinical services when needed.
CLA began its shift from group homes to
individualized supports with the arrival of a new
director in 1990. At that time, the organization had
three six-person group homes. The organization has
approached change one person at a time, with a
focus on promoting better quality lives for the
people they support. People in one of the group
homes in particular were experiencing a difficult
time living with each other, so this home was
chosen as a focus for closure. The organization
wanted to close this home relatively quickly but at
the same time ensure that adequate time and
energy were devoted to planning with people. The
process of closure took 3 years and involved various
consultants who assisted with planning and strategizing regarding the development of community
supports. One of the individuals in the home was
Jeff, who posed some challenging behaviors for
staff. Extensive planning was conducted with a
circle of support, and Jeff was assisted in moving to
his own apartment with a community member as a
housemate. Jeff and this housemate formed a close
relationship and have lived together for 11 years;
Jeff no longer displays challenging behaviors, and
he has become well known in his community
through his long-term involvement in various
neighborhood and community organizations. The
second group home was closed over the next
10 years, as various individuals raised an interest
in moving. The third group home has three people
remaining and will likely close in the next few
years. In addition to this work on closure, since
1990 all new people who have come to the agency
have been supported in individualized ways in the
community rather than in group homes. Currently,
the organization provides residential supports to 55
people. The organization has purposely remained
small, because it values close connections and
relationships across staff, individuals with disabilities, and families and fears that these would be
jeopardized by too much organizational growth.
RCS provides residential support services to
160 people. The organization has been engaged in
transformation efforts since the mid-1980s, beginning with the board’s decision not to develop
intermediate care facilities for those with mental
retardation and to focus on smaller scale settings as
opposed to larger ones (e.g., 4- to 6-person homes
vs. 8- to 12-person homes then being developed
elsewhere throughout the state). By the mid-1990s,
this evolved into a commitment to develop
individualized supports for new people, as opposed
to group settings. In 2001, administrators decided to
close a 10-person group home that had been
established very early in the organization’s history.
They received a grant from the state Developmental Disabilities Planning Council to hire a
consultant to assist with planning for people and
to help with start-up costs for people in new
settings. Within the year, everyone had moved to
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P. Walker 405
individualized support arrangements. By the mid-
2000s, RCS recognized that many individuals
whom they supported were growing older and that
these individuals would likely face future institutionalization as their needs increased. RCS began
working to develop supports and partnerships (e.g.,
with hospice and other agencies that support aging
people) that would enable the individuals they
supported to remain in their homes through the end
of their lives if they desired. Although administrators acknowledged that this effort has used some of
the energy that might have otherwise been devoted
to further group home closure, their success with it
has been a source of organizational pride and positive
energy and has prevented institutionalization of
numerous individuals. At the same time, RCS has
continued to respond, when opportunity arises, by
assisting individuals in moving out of group homes
without then filling the vacancy in the group home;
in the past 8 years, in addition to the 10 people who
moved out of the 10-person group home, it has
assisted 20 individuals to move from other group
homes to their own homes. For example, when Steve
worked in the group home where Matt lived, they
formed a close relationship, which they maintained
after Steve left to work in another group home. On
the basis of their close relationship, in spring 2010
Matt moved out of the group home and into a house
that he shares with Steve.
ACS began work on transformation in the late
1980s, when it closed one of its eight-person group
homes. By 1990, they provided residential supports
to 54 individuals who lived in 12 settings, including
two other eight-person group homes. Within the
following 3 years, the two group homes closed, and
these 54 people were living in 32 settings. In the
process of closure, individuals were interviewed to
establish their preferences for where and with
whom they would like to live. For the next several
years, ACS focused on closing its sheltered
workshop and day habilitation center. By the
mid-2000s, ACS recognized that, although people
lived in small-scale settings, most with one other
person, there had been no accompanying shift in
power and control when people moved from the
group homes. So, beginning in 2008, the organization began working to assist people to increase
self-direction in their lives through use of personcentered planning. This involved moves to new
places for some individuals, as well as increased
opportunities for home ownership and hiring staff
for the specific hours and tasks that they need and
desire. Kevin lived in his own apartment for a long
time but always wanted to own his own home.
Recently, the organization assisted him with
purchasing a home and hiring his own staff. In
the process of assisting him, the organization
developed closer relationships with local housing
organizations that will likely be helpful in assisting
others with home ownership.
Each organization was unique in its specific
approach to change. At the same time, there were
several common strategies across organizations,
including generating commitment to common
values and mission, a turn or return to authentic
person-centered planning, shifting power and
control, using community supports and relationships, moving away from facility-based settings, and
nurturing staff engagement. I discuss each in turn.
Generating Commitment to Common
Values and Mission
A central theme among organizations that were
working on transformation relates to the importance of establishing a clear set of values and a
mission that serve as a guide for change. As one
director commented, ‘‘It’s important to know what
your compass direction is; otherwise it’s easy to
get blown off course.’’ Likewise, another director
offered that it had been important to have ‘‘a
persistence about who we are, what we want to do,
and who we want to be.’’
A key feature of organizations working on
transformation was to increase the visibility of the
values and mission and the degree to which they were
embraced by all staff. There were three main aspects
to this: having deeper conversations among staff in the
organization, exposure to national leaders, and developing new approaches to organizational planning.
Deeper conversations. These organizations felt
it was important that they increase the time spent
in conversations that reached beyond day-to-day
business into broader issues related to implementing
the values and mission. For example, one administrator commented, ‘‘It is challenging to not get
caught up in the day-to-day aspects, and make time
for this. We realize we need to continually make
time for new conversations, deeper conversations.’’
In relation to this, they emphasized drawing a wide
variety of people together for these conversations.
As another administrator explained, ‘‘We have
many more cross-departmental conversations where
we wouldn’t have before.’’
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406 Strategies for Organizational Change
The space for deeper conversations was created
by carving out time from regular meetings, as well as
setting aside separate occasions for in-depth conversation, such as special meetings or staff retreats. For
example, the director of CLA explained how it
selected a theme for the year, such as relationships,
and scheduled a retreat as well as other specific
workshops and discussions on the theme.
Exposure to national innovators. An essential
part of transformation for all of the organizations
was exposing themselves to others around the
country and beyond who are engaged in innovative work. The organizations accomplished this by
inviting key individuals to come and lead a
workshop or a retreat, as well as offering assistance
for staff to travel to attend national conferences or
exchanging visits with other organizations. These
opportunities provided staff members and the
organization as a whole with connections to
others who share similar values and an opportunity to learn about new strategies as well as reflect
on their own work. One director referred to this as
a means of ‘‘inserting ideas’’ into the organization.
Another administrator commented, ‘‘One of the
things we believe strongly is to be part of the
national dialogue. So, we’ve always done that,
in terms of getting people to conferences and
bringing folks in.’’ This exchange with others
has also helped energize agency staff and helped
them gain a sense of being part of a national
New approaches to organizational planning.
Organizational administrators found that incorporating new approaches into organizational planning
helped engage more staff in the organization’s
overall values and mission. Emphasis was placed on
planning that was clearly connected to implementation of the values and mission and that was used
as a guide for action.
Three of the organizations made changes to their
strategic planning, drawing on others in the organization to help generate broader commitment and
enthusiasm regarding the mission. One administrator
recalled, ‘‘I realized the senior management group was
not working well in terms of driving the strategic
structure. There were others in the organization who
were good strategic thinkers that we pulled in.’’
The fourth organization began using an
organizational PATH (Planning Alternative Tomorrows with Hope) process. One administrator
reflected on this planning: ‘‘This has challenged us
to think differently. It has given us direction, and
has helped us map out where we are and where we
want to go.’’ After PATH, this organization
created Teams of Change (including administrators, direct support staff, and individuals who
receive support) to incorporate ideas from PATH
into action.
Promoting Individual Change: A Turn or
Return to Authentic Person-centered
When working on organizational change, the
organizations that were part of this study found
that simultaneously working on creating individual
change was critical. A basis for this is personcentered planning and design of supports. Although
the organizations in this study had considered
themselves to be person centered before initiating
a change process, they recognized the need to
examine their planning approaches. For example,
one administrator reflected,
It seems that our philosophy for a long time has
been person centered, but it’s hard not to get
bogged down in the day-to-day work. We
looked at our planning, and realized that it
had become part of the regular, annual
planning, and that most of the people involved
other than the individual and family were paid
Thus, all of the organizations had to orient or
reorient themselves to more authentic personcentered planning. This reorientation involved
two key aspects. One was that it entailed deeper
forms of collaboration with individuals, families,
and their community networks. The director of
RCS described how this is not only desirable but
essential for sustainability of community supports:
‘‘If I have to carry the commitment for people
alone, I can’t do it. The only way we can do it is in
collaboration with people and families and circles.’’
A second key aspect was that planning not be
driven by traditional services and funding. As the
director of CLA emphasized, ‘‘You have to plan
without preconceived notions. When you have
preconceived programs or preconceived ideas about
what people need, that doesn’t always work.’’
Sometimes it is the provider who has preconceived
notions; sometimes it is families and people with
disabilities who have preconceived notions about
what is available or possible.
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Not Simply Smaller Settings: Shifting
Power and Control
In the past, all of the organizations had created
smaller settings; however, as part of this transition
to individualized supports, it was important for
them to recognize that, in addition to shifts in size,
it was important to make shifts in control. After
having closed three group homes, the director of
ACS reflected, ‘‘But we didn’t do a good job with
circles and relationships; we kept all the power. So
we’d say we were all about individualized support,
but we were far from it.’’ An administrator of
another agency also commented on the need for
change in power and control: ‘‘This is not just a
service change, it’s a relational change, a power
change, a difference of social order.’’
As part of their transformation, organizations
in this study assist individuals to have control or
shared control of their housing (e.g., home
ownership, signing a lease, shared decision making
about a home). Individual budgets are another
means of increasing control by people with
disabilities. Only one of the organizations, RSO,
was located in a state that used individual
budgeting. The other organizations in this study
developed informal individualized budgets within
their organizations for purposes of person-centered
planning and individualized support.
Additionally, all of the organizations made
changes in staff hiring, so that more staff are hired
to support a specific individual rather than a group,
thus giving the individual much greater choice,
input, and flexibility regarding who is hired, what
they are hired to do, and their work schedule. For
example, an administrator at RSO commented,
‘‘Individualized staffing, when possible, creates a
more personalized support situation.’’
Using Community Supports
and Relationships
Organizations that are transforming to a vision of
supporting everyone in the community have
recognized that they must design supports creatively
and actively incorporate paid and unpaid support
from community members. As one director described, ‘‘There is not the funding to support people
24/7 with paid staff in individualized ways; nor is
that necessarily desirable for most people to have
just paid staff.’’ All of the organizations in this study
have used shared living to assist some individuals to
live in the community, which entails finding
community members to provide live-in support.
The organizations studied had varying approaches
to this. All of them typically pay the housemate’s
rent and a portion of the utilities; beyond that, one
organization does not pay the housemate any salary,
whereas the other three generally provide some pay
for the housemate, depending on the situation.
Also, depending on the needs of the person with
disabilities, the shared living situation may be
combined with other paid supports (e.g., for
daytime, weekends). As another option, one of
the organizations also uses paid neighbors, who live
very close to an individual and are paid for several
hours of support per month but are available for
more, should the need arise. In their search for
housemates or neighbors, these organizations do not
settle for just anyone but instead keep searching
until good matches are found.
Use of combinations of paid and unpaid
support provided by community members has
resulted in cost-effective services; for example,
one director noted that ‘‘the average costs of selfdirected services have been consistently lower than
for group homes.’’ However, most important for the
administrators, these situations seem to be highly
satisfactory to many individuals who receive
support, as well as to people who provide supports.
Additionally, in some instances, long-term committed relationships have emerged. As one director
described, ‘‘We have a few cases where people have
lived together for more than 10 years, where there
is a real commitment, a long-term relationship.’’
Moving Away From Facility-based
A key component of organizational transformation
was work on facility closure, as well as an end to the
development of congregate settings. The organizations used two primary approaches to the closure of
group homes. Sometimes they undertook a relatively
short-term closure. For example, RCS spent about a
year focusing on the closure of a 10-person group
home: ‘‘With funding from the [Developmental
Disabilities] Council, we hired a consultant to assist
with person-centered planning. The process took
about a year, and was facilitated by the fact that we
rented the home rather than owned it.’’
Alternatively, some group home closures
occurred over the course of several years, because
the organizational focus was not specifically on
closure but on assisting people, one person at a
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408 Strategies for Organizational Change
time, to have better quality lives. One administrator said,
What we did was to help people live lives that
made better sense for them, and we made a
commitment not to backfill what didn’t work
for people. People saw other people moving,
and they realized, wow, if that can happen for
that person, can’t it happen for me? So, that’s
how the group homes kind of extinguished
Funding can pose a serious challenge to closure
of group homes, particularly when the organization
is paying a mortgage on them. Thus, the organizations that were a part of this study have adopted
multiple approaches to moving away from facilitybased services. Three of the four organizations used
both short-term and longer term approaches.
Additionally, they sometimes reduce the size of
group homes by assisting one or a few individuals
who have a strong desire or need to move and
leaving, at least temporarily, a smaller group of
individuals who are more content to live together.
All of the organizations have also committed to no
new facility development.
Finally, administrators also discussed the followup to facility closure. One recalled, ‘‘Closing the
group home was the easy part of the process, in
retrospect. The challenge is really helping each
person live a quality life.’’ Another concurred: ‘‘If you
have a vision or goal of closure, don’t hold on to that,
because when you get there, your work has just
Beyond Staff Training to Nurturing
Staff Engagement
A first step in staff development is typically stateof-the-art, values-based training. At the same time,
organizations that are working on transformation
recognize the need to go beyond training and
emphasize staff development and engagement:
The dominant part of the day is figuring out
how to develop staff, not from a training
perspective, but from an emotional/relational
perspective. Maybe a recommendation is,
don’t think you’re really engaging staff because
your program reaches all staff with training. …
What we focus on with staff, the word we are
using today is not training, not even to
educate, but to engage.
Three key aspects were related to encouraging
staff development and engagement: teamwork,
leadership, and personal involvement. First, to
promote staff engagement, administrators attempted to create a sense of teamwork. They have found
that this, in addition to improving communication
across staff, helps foster trust and collegiality among
staff. Second, administrators provided a variety of
opportunities for staff to develop their leadership
skills and abilities. For example, the director of
CLA discussed the ways in which she assists staff to
develop their leadership skills by drawing them into
various meetings and conversations with her and
mentoring them, as well as by giving them space to
solve some of their own dilemmas rather than just
directing them to implement her solutions. Finally,
to promote engagement, administrators invite and
encourage staff participation in work on individual
change (e.g., participation in a circle of support or a
person-centered planning process) as well as in
organization-wide change efforts (e.g., retreats,
strategic planning processes).
Lessons and Discussion
On the basis of this research with organizations as
well as the literature, a number of overarching
lessons can be drawn.
There Is No One Model for
Organizational Transformation
The process of organizational transformation is
complex and unique to each organization, based on
specific circumstances, personalities, experiences,
and other aspects of organizational context and
culture (Hulgin, 2004). As the director of RCS
What you’re probably not going to hear from
us is a step-by-step blue-printed process that
can be given to another organization. Lots of
what you’re going to hear has been emergent
through interactions of individuals, context,
finance, politics; so, it’s sort of a stew, but
there’s not a recipe people can pick up and
take away.
Organizational Change Entails an
Ongoing, Continual Learning Process
Once they enter into efforts to create authentic
transformation, organizational leaders come to
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recognize that change requires continual organizational learning and examination (O’Brien & Lyle
O’Brien, 1991). Such continual learning, for
example, enabled an organization such as RCS to
recognize that closing group homes and moving
people to smaller settings was not sufficient and
that they needed to pursue further change to
promote increased self-direction and control of
Formation of Learning Communities or
Communities of Practice Can
Facilitate Transformation
Two of the organizations in this study were
connected with learning communities related to
organizational transformation. In summarizing key
aspects of a learning institute in New York State,
O’Brien (2009) observed, ‘‘Instead of transmitting a
program of instructions for change, the Institute has
been a continuing learning process’’ (p. 12).
Learning communities provide opportunities for
sharing strategies and resources and for problem
solving and collaboration with representatives of
other entities such as state and regional administrators, service coordination, self-advocacy, and
others (Mount, 2010; Scott et al., 2010). Additionally, learning communities are a significant
source of positive energy. An administrator of an
organization involved in a learning community
reflected, ‘‘This has been a lifeline for us.’’
State Policy Context Can Pose Significant
Challenges to Transformation
The state context can pose numerous challenges to
organizations transforming to provision of individualized supports. With respect to this, Smull,
Bourne, and Sanderson (2009) stated, ‘‘Organizational leaders find that while there are many
changes that they can make, some of what is not
working reflects the need for system change’’ (p. 6).
One of the challenges is funding levels that are
inadequate to support people with significant needs
in the community. As previously described, to
address this issue the organizations have designed
creative combinations of paid and unpaid supports,
using the community resources of families, friends,
neighbors, and other community members. Furthermore, to increase the organization’s general
revenue, and in response to requests from and needs
of the people they support, the organizations have
developed new services, such as postsecondary
education services and consumer-directed services
for people who are elderly or homeless, and provide
technical assistance, consultation, or mentorship to
other organizations regarding the development of
individualized supports.
Another challenge is funding mechanisms that
are not a good match with individualized support.
For example, only one of the organizations was
located in a state that uses individual budgets,
which incorporate the flexibility to blend funding
across various service categories, such as day
services and residential services. In the other
organizations, directors informally created individual budgets for purposes of planning and resource
allocation. However, they were typically not able to
blend the funding. Finally, in terms of funding
mechanisms, providers have found that funding
based on a half-month or monthly time period is
much more conducive to supported living than
funding based on much smaller units, such as an
hour or quarter hour. Located in a state that is
moving toward use of smaller units, one of the
organizations is working with a statewide provider
association to advocate for preservation of the
larger time units.
Third, nurse practice acts pose some barriers to
supported living in many states. For example, one
provider explained that although state law provides
for the possibility of delegation of nursing duties, this
applies only in certified settings, not in uncertified
settings, such as shared living. This state has an
exemption for people who are capable of selfadministering medication. Thus, this provider places
an emphasis on assisting as many people as possible
to self-administer their medications.
Fourth, in some states mechanisms for selfdetermination (e.g., self-direction of services) are
associated with complex regulations and excessive
paperwork. At the organizational level, administrators of the organizations that were part of this study
worked to minimize paperwork for individuals with
disabilities and families, to make the paperwork
clear and concise, and to give people maximum
opportunity for control and self-direction, whether
using funding streams that were specifically associated with self-determination or not (e.g., assisting
an individual to select the staff who supports him or
her, whether or not that individual is officially the
employer of record).
Overall, the organizations that were part of this
study have established positive reputations with state
officials for delivering quality, cost-effective services.
2012, Vol. 50, No. 5, 403–414
DOI: 10.1352/1934-9556-50.5.403
410 Strategies for Organizational Change
They welcome and invite visits from state administrators and state policymakers. This positive reputation has on occasion proven beneficial to them as
they advocate for specific funding for an individual
or regarding certain operational issues. However, it
does not typically lead to systemic change.
With regard to systemic change, within their
states all of the organizations are engaged in efforts
with other organizations, self-advocates, and family
members to dialogue with state administrators to
identify and address the barriers to supported living.
For instance, as noted earlier, one of the organizations is working with a statewide provider association to preserve funding mechanisms (e.g., daily or
monthly reimbursement) that facilitate supported
living. In another state, one of the organizations is
part of a learning community of providers, state
administrators, self-advocates, and other stakeholders who have been working together to identify and
address key obstacles to supported living. For
example, they have worked to develop an individual budgeting process (with a concise application
form), including blended day and residential
funding, and to amend the nurse practice act in
their state.
Organizational Change Can Have a
Positive Impact on the Lives of
Individuals with Disabilities
The four brief examples provided in the organizational profiles indicate the types of changes that
occurred in people’s lives. Organizational administrators reported very high consumer satisfaction
rates with individualized supports. Moreover, and
most important in the minds of administrators,
were the qualitative differences in people’s lives
and the greater happiness and contentment that
they observed through personal interaction and
conversation with the individuals. In conjunction
with this, administrators pointed to markedly
decreased incidents of challenging behavior and
decreased use of psychotropic medications. Further
investigation on the impact of organizational
change on the lives of individuals is needed,
particularly from the perspective of individuals
Any Organization Can Make
Some Change
Despite varying organization-level and systemslevel contexts, all of the organizations were able
to achieve some substantial change. Although
systems-level change will facilitate the provision
of individualized supports and further organizational change in this direction, it is important at the
organizational level not to simply wait for statelevel change. O’Brien (2010) quoted an administrator whose organization was empowered by the
idea that it could proceed with change: ‘‘Things
shifted when we realized that regardless of what the
state does, we are going to move toward individualized supports’’ (p. 26).
Limitations of This Study
One limitation of this study is that all of the people
who were interviewed were selected by the
organizational directors. Thus, some alternative
viewpoints may not be represented. Another
limitation is that this research incorporated little
focus on state-level dynamics that have an impact
on organizational transformation. Further in-depth
examination of the state context would be an
important direction for future research. A third
limitation is that this article does not provide
evidence of change in the lives of individuals as a
result of the work on organizational change. The
brief examples that are given offer some indication
that significant change has occurred for some
individuals. At the same time, all of these
individuals were chosen as research participants
by the organizational administrators. Thus, again,
other types of experiences may not be represented.
Again, a direction for future research would include
in-depth study of the individual perspectives and
experiences of the shift from traditional to
individualized support services. Fourth, I studied
the organizations on the basis of only one visit
rather than numerous visits over time, which
placed some limitations on my ability to capture
the complexity of organizational change over time.
Finally, the organizations I studied were nominated
as having had some success at transformation. Thus,
this study does not include learning from other
organizations that may have faced more difficulties
and challenges associated with transformation.
Organizations arrive at the decision to transform on
the basis of varying experiences, circumstances, and
frameworks. Some frame their change in terms of
self-determination, some in terms of person-centered
planning, and some in terms of better quality lives.
2012, Vol. 50, No. 5, 403–414
DOI: 10.1352/1934-9556-50.5.403
P. Walker 411
Across all of them, there are many commonalities
with regard to strategies for change.
Authentic organizational transformation from
facility-based supports to individualized, personcentered supports requires much more than just
program or service change; it entails comprehensive
cultural change across the organization. Key
strategies include generating commitment to common values and mission, authentic person-centered
planning, shifting power and control, using community supports and relationships, moving away
from facility-based settings, and nurturing staff
engagement. These strategies seem to be effective
in helping organizations in diverse contexts make
some significant shifts.
Overarching these strategies is the need for
organizational perseverance and commitment to
the change process. Organizational change is a
long-term, ongoing endeavor. All of the organizations in this study have been engaged in change
for close to 20 years, and all are still very much in
the process of change and evolution. At the
outset, even with rigorous planning, none of the
organizations knew exactly how transformation
would be achieved. However, they all had a
steadfast organizational commitment to engagement in the process of change. As one director
succinctly advised, ‘‘You don’t have to know all
the answers, you just have to be willing to be in
the process.’’
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Received 5/17/11, first decision 8/12/11, accepted
Editor-in-Charge: Glenn T. Fujiura
Preparation of this article was supported by a
subcontract with the Research and Training Center on
Community Living and Employment, University of
Minnesota, supported by the U.S. Department of
Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and
Rehabilitation Research (NIDRR), through Contract
No. H133B080005. Members of the center are
encouraged to express their opinions; however, these
2012, Vol. 50, No. 5, 403–414
DOI: 10.1352/1934-9556-50.5.403
P. Walker 413
do not necessarily represent the official position of
NIDRR, and no endorsement should be inferred.
I acknowledge Steve Taylor, Rachael Zubal-Ruggieri,
and Cyndy Colavita for their assistance with and
support of my work. Additionally, acknowledgment is
given to the constructive, helpful input from the
reviewers and editor. Finally, deepest appreciation is
expressed to the individuals and organizations who have
shared their stories and experiences with me.
Pam Walker (e-mail:, Center
on Human Policy, Syracuse University, 805 South
Crouse Avenue, Syracuse, NY 13244-2280, USA.
2012, Vol. 50, No. 5, 403–414
DOI: 10.1352/1934-9556-50.5.403
414 Strategies for Organizational Change
Re´sume´s en Franc¸ais
Les besoins de soutien de la fratrie de personnes
pre´sentant une de´ficience intellectuelle
Catherine K. Arnold, Tamar Heller et John
Cette e´tude qualitative examine les besoins de
soutien de la fratrie adulte de personnes pre´sentant
une de´ficience intellectuelle. Un sondage portant
sur les pre´occupations et les besoins de la fratrie
adulte en deux questions ouvertes a e´te´ re´alise´ aupre`s
de 139 fre`res et sœurs de personnes pre´sentant une
de´ficience intellectuelle. Une the´orie a` base empirique a e´te´ utilise´e et les re´ponses de la fratrie ont pose´
les bases de l’analyse, l’interpre´tation des re´sultats et
la discussion en utilisant la me´thode de comparaison
constante. Onze variables de base et trois grands
the`mes sont ressortis. Les trois the`mes dominants
concernant les besoins de soutien de la fratrie
comprennent: (a) l’obtention des informations lie´es
a` la de´ficience; (b) obtention du soutien dans leur
roˆle d’aidant, et (c) ame´lioration du syste`me de
soutien formel afin de re´pondre aux besoins de la
Colonoscopie et de´pistage du cancer colorectal
chez des adultes pre´sentant une de´ficience intellectuelle: une revue des e´tudes de cas et des
recommandations pour l’examen
Leonard S. Fischer, Andrew Becker, Maria
Paraguya et Cecilia Chukwu
Les adultes pre´sentant une de´ficience intellectuelle
(DI) ont des comorbidite´s pouvant interfe´rer avec
la pre´paration et l’examen de colonoscopie. Nous
avons re´vise´ les expe´riences de colonoscopie
effectue´es entre 2002 et 2010 dans un e´tablissement
d’e´tat chez des adultes pre´sentant une DI pour
e´valuer la qualite´ et la se´curite´ des examens et pour
formuler des recommandations pour en ame´liorer la
qualite´. Cinquante-neuf proce´dures ont e´te´ e´value´es chez 47 adultes pre´sentant une DI. En plus
de pre´senter une DI, ces individus avaient des
comorbidite´s associe´es incluant un trouble de la
motilite´ digestive et de l’e´pilepsie. Nous avons
compare´ les re´sultats de ces examens a` ceux de 40
adultes sans DI se´lectionne´s ale´atoirement entre
2004 et 2008. Dans le groupe des personnes
pre´sentant une DI, la pre´paration e´tait ade´quate
dans 51% des examens et inade´quate dans 46% des
cas. Dans le groupe controˆle, la pre´paration e´tait
ade´quate dans 95% des examens et inade´quate dans
5% des cas. Il y avait un taux plus e´leve´ d’examens
e´choue´s dans le groupe DI. Il ya avait aussi des
complications relie´es a` la pre´paration dans le
groupe DI.
Comprendre les diffe´rences entre les inte´reˆts
particuliers chez les individus neurotypiques et
chez ceux pre´sentant un trouble du spectre
autistique par le biais de forum Internet
Chloe Jennifer Jordan et Catherine L. CaldwellHarris
Les inte´reˆts restreints sont fre´quemment de´veloppe´s
chez les individus pre´sentant un trouble du spectre
autistique, et exprime´s par une attention importante porte´e a` des sujets particuliers. Les individus
neurotypiques de´veloppent aussi des inte´reˆts particuliers, souvent sous forme de passe-temps. Malgre´
les recherches de´ja` faites sur les inte´reˆts restreints
d’enfants pre´sentant un trouble du spectre autistique, on en connaı ˆt peu sur leur roˆle durant l’aˆge
adulte. La pre´sente e´tude examine les diffe´rences en
terme de contenu, de nombre et de la spe´cificite´ des
inte´reˆts particuliers pre´sente´s par des individus
d’aˆge adulte neurotypiques et des personnes pre´-
sentant un trouble du spectre autistique en utilisant
des forums de discussion Internet comme source de
donne´es. L’analyse quantitative des entre´es des
forums de discussion a de´montre´ des diffe´rences
significatives entre les deux groupes diagnostiques.
Les individus pre´sentant un trouble du spectre
autistique ont de´clare´ avoir plus d’inte´reˆts syste´matiques, des inte´reˆts plus spe´cifiques, ainsi que,
globalement un plus grand nombre d’inte´reˆts, en
comparaison avec des individus neurotypiques.
Des strate´gies visant les changements organisationnels des foyers de groupe au soutien individualise´
Pam Walker
De plus en plus, les e´tablissements tentent de passer
des services en e´tablissement pour les adultes
pre´sentant une de´ficience intellectuelle vers un
soutien individualise´. Une telle conversion implique non seulement un changement dans les
2012, Vol. 50, No. 5, 438–439
DOI: 10.1352/1934-9556-50.5.438
438 Re´sume´s en Franc¸ais
services, mais aussi une transformation de la culture
organisationnelle. Cette e´tude qualitative implique
quatre e´tablissements ayant effectue´ des efforts
substantiels pour changer. Bien que l’approche
adopte´e pour chaque e´tablissement soit unique,
des strate´gies communes sont tout de meˆme
pre´sentes. Celles-ci incluent de ge´ne´rer un engagement a` des valeurs et une mission communes, aller
ou retourner vers une planification authentique
centre´e sur la personne, changer le pouvoir et le
controˆle, utiliser les soutiens et les relations de la
communaute´, sortir du cadre de l’e´tablissement
et nourrir l’engagement des employe´s. Finalement,
le changement organisationnel est un processus
continu qui requiert de la perse´ve´rance et un
engagement organisationnel.
Les effets mode´rateurs de l’autisme sur le point de
vue des parents concernant le de´pistage ge´ne´tique
pour l’agression
Michael E. May, Rachel C. Brandt et Joseph
K. Bohannan
Les avancements de la recherche sur les interactions ge`ne-environnement ont re´ve´le´ des ge`nes
qui sont associe´s a` l’agression. Toutefois, nous en
savons peu sur les perceptions des parents concernant le de´pistage ge´ne´tique des symptoˆmes
comportementaux de l’agression en comparaison
aux perceptions lie´es au de´pistage diagnostique de
de´ficiences. Ces perceptions pourraient influencer
les futurs travaux de recherche incluant les e´tudes
ge´ne´tiques relie´es au comportement, incluant les
approches proactives des parents pour e´viter
certains e´ve´nements de´clenchant une agression.
Le but de cette e´tude e´tait de solliciter le point de
vue des parents ayant des enfants autistes sur le
de´pistage de ge`nes lie´s a` l’agression et le comparer a`
celui des parents ayant des enfants sans de´ficience
ou a` ceux qui planifient avoir des enfants. Les
parents d’enfants autistes e´taient plus susceptibles
de favoriser le de´pistage et l’utilisation des re´sultats
dans la recherche de traitement, si ne´cessaire. Les
re´sultats sont discute´s dans le contexte du de´pistage
de surveillance et des interventions pre´coces
syste´matiques pour les symptoˆmes comportementaux relie´s a` l’autisme.
La perse´ve´rance et la re´silience dans une vie
remplie de professionnels et d’e´tiquettes: Extrait
de l’histoire de Chris
Geert Van Hove, Susan L. Gabel, Elisabeth De
Schauwer, Kathleen Mortier, Jos Van Loon,
Gerrit Loots, Patrick Devlieger, Griet Roets et
Lien Claes
Dans cet article, les auteurs racontent la vie de
Chris a` l’aide d’extraits de son histoire, qu’elle leur
a demande´ de raconter. Ils ont de´cide´ qu’elle peut
eˆtre utile afin de fournir un aperc¸u des diffe´rentes
fac¸ons dont les gens avec des e´tiquettes sont confronte´s
aux pratiques professionnelles et aux rituels. Bien que
Chris ait ve´cu une «vie difficile», son histoire est
remplie de re´silience et de perse´ve´rance. Chris restera
dans la me´moire des auteurs comme e´tant une femme
forte, une enseignante, et une amie.
The French translation of the abstracts has been
coordinated by «AAIDD-Que´bec» with the collaboration of Laurence De Mondehare, Marc-Andre´ Gagnon,
Marie-Pier Guimont, Audre´e Tremblay, and Diane
La traduction des re´sume´s en franc¸ais a e´te´ coordonne´e
par «AAIDD-Que´bec» avec la collaboration de Laurence De Mondehare, Marc-Andre´ Gagnon, Marie-Pier
Guimont, Audre´e Tremblay, et Diane Morin.
2012, Vol. 50, No. 5, 438–439
DOI: 10.1352/1934-9556-50.5.438
Re´sume´s en Franc¸ais 439
Reproduced with permission of the copyright owner. Further reproduction prohibited without

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