INDEPENDENT CHOICES: A National Symposium on Consumer-Direction and Self-Determination for the Elderly and Persons with Disabilities. Making Self-Determination Work

Charles Moseley, EdD, Co-Director
National Program Office, Self-Determination for People with Developmental Disabilities

In 1996, the Robert Wood Johnson Foundation (RWJ) provided funding to 19 states to develop and implement a new approach to supporting people with developmental disabilities. Entitled "Self-Determination," the concept is based on the premise that control over the services and supports that are offered to people with developmental disabilities should rest with the person receiving those services. State-of-the-art approaches to supporting people with developmental disabilities have long advocated the direct involvement of the individual receiving supports in the development of his or her plan of care. Self-determination takes the next step by placing final authority over the nature, extent and duration of services with the consumer. This approach differs significantly from the funding and decision making structure traditionally employed by state and local agencies responsible for assuring service delivery by including the individual as the primary decision maker in the process.

The overall objective of the RWJ initiative is to change state service delivery systems to actively support, encourage, and enable people to directly control the services they receive and the resources provided on their behalf. For some people receiving services, this change means taking active control over all aspects of their support system; budget, record keeping and supervision of support providers. Others, in contrast, may elect to assume direct control over a part of the supports they receive and may delegate responsibility for other aspects of their program to various individuals or members of their support team. The choice rests with each individual, his or her guardian/family and those he or she has chosen to rely on for assistance. Restructuring a system to enable those receiving support to "have it their way" means changing virtually all of the components of the current system to a greater or lesser extent. Implementation of self-determination, for example, will typically face different challenges for states with traditional, highly centralized systems that allocate funds through regulated rate setting formulae, than it will for states with more decentralized community systems that use comparatively flexible individual funding procedures.

To develop an understanding of the strategies that projects have found to be effective, an e-mail survey was recently sent to the project coordinators of each of the 19 states that received funding. Fourteen of the coordinators responded. The survey asked each person to briefly list five strategies that they used to implement self-determination over the past couple of years that really seemed to work, and five strategies or actions that did not seem to work very well.

Project administrators provided information regarding the approaches they use to cause change; tactics that bring about the intended results and those that are less productive or slow the process. Although the responses vary between states, there are several themes that are consistent in the answers received. The following are listed in order with the most frequently cited listed first.

 

WHAT WORKS

Effective System Change Strategies:

Project coordinators credit the use of a particular strategy to bring about change as a key factor in the success of their initiatives. Components of successful strategies include:

  • Project flexibility: Not dictating a specific way to implement. But letting the [local] sites implement based on their own 'readiness' levels and their own resources.
  • The reliance upon identified staff or contact people to lead the change process.
  • A one person at a time approach that focuses on individuals rather than programs.
  • Implementation through pilot projects designed to test new structures, policies or practices before they are brought to the full system. Pilot sites have used the grant to set up lab situations. They then take what they have learned...and change the way they deliver services for everyone at the agency.
  • Implementation through system-wide reorganization that changes the structure and functioning of the entire developmental disabilities service system to enable people to self-determine. We looked at this initiative not as a pilot or demonstration, but as a new way of doing business, creating a system available to EVERYONE and not only to some in the system.
  • Conceptualizing change as the development of a long-term capacity to support individuals in their own communities, rather than as a project designed to accomplish short term objectives.
  • Addressing change from the bottom up and top down by focusing on both the individual and state policy administrators at the same time, from the grassroots to state officials to legislators. Or, as another project coordinator put it, Understanding that in order to promote self-determination for the people served by the system, we also have to promote the self-determination of all who are involved with the system in some way -- staff, family members, providers.
  • Changing rules and regulations when they got in the way or did not adequately support self-determination.
  • Consciously communicating a clear sense of purpose, identifying short-term goals and achievements.

Regardless of whether states implemented self-determination through broad based system change initiatives, or more localized pilot projects, coordinators attribute the success to the presence of a planned strategy to bring about change.

Bringing People Together in Coalitions to Advise, Plan, Train and Educate:

Project coordinators stress the importance of developing strong coalitions by combining the efforts of the project staff with those of self advocates, families and providers to jointly address concerns and build common agendas. Key activities mentioned include:

  • Involving people with disabilities and families in discussions and activities, from the beginning,
  • Developing new partnerships with providers around self-determination and,
  • Relying upon integrated groups comprised of representatives of all stakeholders to bring about system change.

One project coordinator put it this way, using these integrated groups, which we have done for virtually every task and process we have addressed through the project, [has been] invaluable in redefining how people see people with disabilities, and each other, and in building the consensus necessary to move the project forward. Another respondent identified the importance of including other groups as partners in the change process, noting that the state director of the Division of Developmental Disabilities Services worked to form a powerful guiding coalition, [developing] bonds between advocacy, provider, families, self-advocates and state folks to push for systems reform. Another project coordinator indicated they involved people with disabilities, families and providers from the beginning by hiring people representing each group to provide training and technical assistance on self-determination and to facilitate the change process. [We have been] using the trilogy model of technical assistance: consumers, families, and providers to provide information, training, problem solving, in system change activities.

Providing Training:

Project coordinators emphasize the importance of training at all levels and at all times during the project as a key feature of the success they experienced. One person put it this way: Train, train, train. At every opportunity and juncture we provide training. Sometimes we repackage the same ideas -- it takes awhile for all of us to get it -- particularly those who are certain they've got it, but don't.

Coordinators note that training is particularly effective when it is inclusive, utilizing presentations and activities that involve stakeholders in all sessions from the beginning. They also emphasize that training is most effective when it is value based, relating the content to the core principles, philosophy and goals of self-determination, and when it demonstrates a commitment to self-determination by utilizing people with disabilities and families as trainers. Some state that they find the use of "external experts" in training particularly effective, while others less so, depending on the nature of the message and the audience (see below). One project coordinator credited the development of an "Educational Tool Box" used by advisory team members and staff to conduct presentations to ten different target groups on the values of self-determination as particularly effective.

Training is seen as important, not only because it offers the opportunity for families, staff and individuals with disabilities to learn new ideas and the issues involved in self-determination, but also because it communicates the expectations of the state regarding change. One project coordinator wrote, People needed to hear what was expected of them in a self-determined system, and needed to hear that they had permission to proceed.

Employing Effective Communication Strategies:

Project coordinators state that their ability to achieve successful project outcomes is significantly strengthened by the use of effective communication strategies, including:

  • Like talking to like: Coordinators note that information is received more readily and with less resistance when it is communicated by a member of the individual's own group. Providers, for example, are more likely to accept information from other providers; families from other families and self-advocates from other self-advocates. The value of locals communicating with locals, was also stressed as being more effective than having information exclusively come from someone from the state central office, or another community.
  • Sharing stories across the state: People want to know that they are a part of a broader effort that involves people in different communities. Sharing individual stories of how people in other parts of the state cope with issues, experience success or answer similar questions is described as a particularly effective way of spreading the message of self-determination.
  • Establishing a sense of urgency: One project director stated they consciously communicated a sense of urgency around their state's efforts to change the system to adopt principles of self-determination through the language of key administrative staff and the pacing of the change process.

Including Self-Determination Principles in Legislation, Regulations, Policy, Planning, and System Redesign Activities:

Many project coordinators identify the importance of including the principles of self-determination by specific reference in statutes, regulations, policies, procedures and planning documents as central to the success of their efforts. Regulatory change was used to ensure people receiving services have the clear authority to control the funds allocated in their behalf, to access the individual supports they need or to ensure a person-centered planning process. One director credits recently passed legislation that charges all agencies to explore the use of Fiscal intermediaries and vouchers to purchase services, such as personal assistance services, respite care, etc., so that people ...will have more control over the services they receive as well as the providers, as having a significant impact on the ability of their project to move ahead.

Effective Financial Strategy:

Several project coordinators identify the presence of a creative and effective financial strategy as another component of the successes they experienced. The development and/or use of an independent financial organization (fiscal intermediary, independent services organization, administrative services organization, etc.) separate from the regular service delivery system is cited as an effective way to enable people to control the resources provided for their support and to provide assistance with accounting, employment and record keeping.

Additional Strategies for Change Identified as Successful Include:

  • Focus on local communities and issues: Supporting community decision makers to take an active role in local implementation efforts.
  • Working across organizational boundaries to forge new relationships state departments, agencies and community organizations not typically involved with services for people with developmental disabilities,
  • Freedom to be flexible and experiment,
  • Direct involvement of project staff in top level division and department management meetings.

 

LESSONS LEARNED: THINGS THAT GET IN THE WAY

Many project coordinators point out that the strategies they identified as not working do not represent activities or approaches that failed outright or had not been productive in any way, as much as they are methods that offered only limited success, tactics that needed to be improved upon, or areas that require additional attention. An approach listed by one project as particularly effective, may prove less so for another. For example, while some projects found the changing of regulations to include reference to self-determination to be a successful strategy, others believe the absence of regulations provides them with the freedom to experiment and try out new ideas. Still others, mentioned that some consumers found the absence of regulations unsettling, believing it made the system less predictable and less accountable.

Involve Stakeholders from the Beginning:

Project coordinators stress the importance of involving people with disabilities, providers, families, and others from the beginning as a key to successful implementation. They also note the lack of such involvement to be a key deficit. People state that implementation of their projects was held back when the various constituent groups were not involved in a coordinated fashion from the beginning, when people felt they had been left out of the communication loop, or when they were not directly involved in key planning activities. Providers, in particular, needed to be involved in discussions of system design and planning from the early stages. One coordinator put it this way: attempts at system change which have not involved all the stakeholders have often come back to cause problems later, with those excluded feeling as if something is being done to them, rather than with or for them. She notes that this was especially true of providers.

Getting people together, however, is only half of the battle. Each of the various groups comes to the table with their own agendas. Communication can become challenging when, as one person commented, some don't want to play the game or collaborate with others. Several of those responding to the survey note that it was frequently difficult to help participants and families really took outside the box to new alternatives that might be available and to bring stakeholders to an agreement on key structural and philosophical issues. Finally, coordinators identify the need to learn and respect particular preferences for involvement that exist among the various groups. For example, self-advocates in one state preferred to work locally in their own communities, rather than on a statewide basis.

Develop Effective Communication Strategies:

Several coordinators identify communication as an area that requires considerable attention. Progress goes smoothly when communication between all stakeholders is good, and is hampered or stops altogether when communication breaks down. Coordinators state that it is important to spend enough time with groups to make certain they understand the purpose and goals of the project, and identify the lack of such attention as a barrier to success. As one director put it, communicate, communicate, communicate. Nature abhors a vacuum. If there is not enough correct information, rumors run wild. People feel left out -- like things are being done to them instead of with them. Other project coordinators note that everyone needs to hear the same thing at the same time, that the speakers who are brought in must have credibility with stakeholders and must be able to speak to their audiences in a manner and using terms they understand and accept. One coordinator notes that training does not provide people with vision, and attention needs to be placed on the use of communicators who can inspire people to see the potential of self-determination.

Address the Need to Manage Dual Systems:

Whether sites are implementing self-determination as a pilot project or as a part of a broader system restructuring activity, the process is not being accomplished in isolation. A consistent theme in the responses referred to the difficulty of achieving results while working within the structure of the traditional system with simultaneous, and at times competing, responsibilities to manage both effectively. Project coordinators describe how hard it is to place new approaches into practice within the context of multiple system change activities that are occurring in their states, departmental restructuring, new managed care initiatives, and other day-to-day operational activities that pull time and attention away from their efforts to develop self- determination.

One project coordinator, for example, worried that the success and attractiveness of the pilot project would pose difficulties for the rest of the department as people begin to request supports that redirect control from the traditional system before it is equipped to adequately respond. He was concerned that the department would be "blindsided" by providers or others who have an interest in keeping things the way they are and do not want to change.

Coordinators additionally mentioned that some providers and families are confused and threatened by the lack of regulations regarding self-determination and the acceptance of a new approach that does not have clear expectations regarding roles and responsibilities.

Clearly Define New Roles and Responsibilities:

Self-determination is typically being implemented by changing existing systems, rather than by creating totally new ones. Job descriptions are being re-written as the roles and responsibilities of staff shift to carry out different functions. Problems can occur when the message of change is unclear, when job assignments and responsibilities overlap, when families express reluctance to give up preferred staff, or when providers resist changes in current operating procedures.

Independent service coordination and brokerage is a key component of self- determination. Project coordinators identify the challenge of changing current program structures to carry out new functions, and of moving existing staff to assume new roles. One person described the difficulty of moving forward this way, We believed, and still believe, the people who facilitate person-centered plans and budgets need to be independent of financial, organizational and historical affiliations with the people they are supporting. Providers and our support coordinators have disagreed. Another person notes that [under the self-determination project]...a certain amount of resources are removed from the Area's control, and the service coordinators participating in the project must behave in ways that the supervisory staff may not understand or appreciate. The experience may become alienating for participating service coordinators and the environment has the potential for being a breeding ground far resentment.

Resolve Individual Budgeting and Finance Issues:

Several project coordinators wrote of the challenges involved with the development and large-scale implementation of individual budgets. One director stated, We have not found ways to really put money in the hands of the people we support. We still struggle with what it means, since it is virtually all Medicaid dollars. Another described the difficulty, trying to implement new ways of thinking and doing under a fee for service system. Others responded that the individual budgeting process and outcome turned out to be overwhelming for some people receiving services, and that the project needed to figure out more effective ways to support people through the process. She described the situation this way, I suspect we over-estimated the appeal of actually controlling dollars. For the most part, people seem to just want more individualized stuff. They want their needs met in ways that enhance their lives. In order for them to do that they must control money, understand the rules and regulations, negotiate budgets, all the pieces that go along with S-D. For some people it seems fairly overwhelming. We need further development of the broker/mentor role to take on some of the 'grunt work;' someone who understands how to effectively access the things that people really want and need.

Pay Attention to the Pace of Change:

A theme in the responses of many project directors relates to the pace of change. Everything takes longer than we expect. Its hard work and it takes time. For some it was too fast, particularly given their other duties and responsibilities. For other individuals, however, the process was moving too slow, and they felt the need for more pressure or urgency to move things forward and implement the changes that were being discussed. Others state that they feel implementation was hampered by unrealistic expectations regarding the changes that could actually be accomplished during the time frame. One coordinator wrote, moving with fewer people in the project may have given us more time and energy to systematically move the system change forward more effectively.

Additional Issues:

Project directors identified several other issues that seemed to get in the way of the ability of their program to move forward, including:

  • The lack of direct support for project staff who were implementing the changes,
  • Taking too long to respond to questions from stakeholders,
  • The difficulty of learning how to develop support and interest from providers,
  • Changing the titles of staff members without changing their roles responsibilities.

 

SUMMARY

Several themes are reflected in the responses of self-determination project directors who responded to a short e-mail survey. The following strategies are seen as having a positive impact on the change process:

  • Using an effective methodology to achieve system change from the beginning,
  • Bringing consumers,,families and providers together in coalitions to advise, plan, train and educate,
  • Providing training to everyone involved in the change process,
  • Employing effective communication strategies to get the message across,
  • Including self-determination principles in legislation, regulation, policy planning and system redesign activities and,
  • Using an effective financial strategy.

Project coordinators describe a change process that moves forward in a purposeful manner, yet is flexible in order to meet the needs of individual situations. Some strategies are more effective than others at bringing about desired outcomes, and it was frequently difficult for respondents to identify particular activities or tactics that did not work because they do not see the situation in those terms. Accordingly, the following "needs" were identified as key lessons learned:

  • Involve stakeholders from the beginning,
  • Develop effective communication strategies,
  • Address the need to manage dual systems
  • Clearly define new roles and responsibilities,
  • Resolve individual budgeting and finance issues and,
  • Pay attention to the pace of change.

The author appreciates the time and effort project coordinators spent completing the survey and the many follow-up discussions that took place.

This paper available from Charles Moseley, EdD, Director, University of NH, Institute on Disability, National Program Office on Self-Determination, 7 Leavitt Lane, Suite 101, Durham, NH 03824-3522, Tel: 603-862-4810, Fax: 603-862-0615, E-mail: chas.moseley@unh.edu