INDEPENDENT CHOICES: A National Symposium on Consumer-Direction and Self-Determination for the Elderly and Persons with Disabilities. System Change and Self-Directed Services: Lessons Learned

Roger Deshaies
New Mexico Department of Health
January 22, 2001

These comments and observations may be familiar to you. Your own experiences with organizational development and management of a social services system may have resulted in similar conclusions. The following thoughts and points stem from several forays into system change and some of the lessons I learned, some the hard way. The system change efforts include the closure of a state operated institution for people with mental retardation in Maine (Pineland Center), the closure of a state operated institution in Arizona (the Arizona Training Center in Tucson) and the introduction of consumer self-directed model also in Arizona.

A Vision Statement is important but a Shared Vision is required.

The decision to close Pineland Center was made at a management meeting, proudly announced the day after and then severely criticized for the better part of 18 months. The decision to close the Center was criticized even by organizations and individuals supportive of developing a community-based system. The reason for much of the criticism was that the vision, proudly shared, was developed in isolation from people with disabilities, their families, service providers and others with an interest in the outcome.

The simple lesson is that people impacted by decisions need to be part of the decision making process. They need to develop a sense of ownership with the direction being undertaken.

There will always be individuals and/or groups that will not "sign-on", however while they tend to be loud, they are often few in numbers. Having a shared vision provides a great counter to the boisterous few by demonstrating the community support for the direction of change in the system of support.

The importance of communication cannot be overstated but it is the significance of conversations that really contributes to success.

The rules of effective communication apply, of course, especially the mandate for continuous communications. The importance of clarity, honesty and communicating using multiple media must be part of any strategy.

You can acquire numerous books on communication and effective strategies. A simple lesion, however, is that visibility fosters credibility. While those strategies work and are important, simple conversations with individuals and groups can have a greater impact. But they must be conversations where you are prepared to listen and answer questions both that are asked and implied. What is an implied question? The one often that lurks beneath the apprehension of change is "how will this change affect me?" There is a reluctance to ask such a personal question but it is an issue that significantly impacts on the willingness of people to participant in true system change and redesign.

You need to understand how the change that is being planned impacts on individuals within the organization, their roles, responsibilities and future. What does self-directed services mean to my job if I now currently approve and make those decisions? Will have a job? If I will have a job, what will I do? What are the requirements for the emerging duties that I will have? Will I qualify and can I succeed? Often these questions are not asked but they exist in the minds of many within the organization, even with the managers who are planning the redesign.

There is honesty and then there is honesty!

Within the systems that I have worked, it was not uncommon to hear someone say, "they just did not ask me the right question." Usually some statement was associated with a legislative hearing or an interview with a reporter. This lack of communicating candidly will create a problem in implementing system reform. The motivation for partial statements at times is in deference to hurt feelings, morale, and premature disclosures or to avoid confrontations. Sometimes the reason is that you simply do not know the answer and you try to "dance" through the issue with vague comments. Statements are therefore put through such a spin control that technically you are telling the truth but the omissions or generalities often make the message incomplete at best or at worst disingenuous.

There is a fine line to walk in system change efforts. Research has supported the importance that people place on the belief that management knows what it is doing during a redesign effort. This obligation can sometimes hamper a change effort if key decision-makers internalize a belief that they must have answers to all questions before any action can be taken. Welcome to "analysis paralysis," one of the challenges that must be overcome.

The simple lesson learned is that it is ok to acknowledge that you do not know the answer yet it is never ok to be dishonest. The truth of system change is that we often learn together and openness often leads to trust which is essential to effective leadership. My experience has taught me the following:

  • You will never have all the details or specifics;
  • Most of what is learned is learned by doing;
  • No matter how well planned, change is often messy and somewhat chaotic
  • No matter how well you plan, something will be missed or will not unfold as planned.

To acknowledge that you are uncertain or do not know an answer does not mean that you are indifferent to the issues or the concerns. That is why it is important to do your homework and be able to articulate clear values and beliefs supported with data and research.

It is important to acknowledge that it some ways the work is "still in progress" and to use the "conversations" you had to demonstrate changes made in the planning and implementation process. It is especially important to demonstrate an understanding of so unintended consequences" and how the implementation will be monitored to avoid such actions. One effective strategy to address concerns regarding unintended consequences is to hold participants harmless. You agree upon a certain threshold, whether its financial or other standards for a time-limited basis. This often removes the uncertainty as a barrier to moving forward.

Making the case for change and instituting a sense of urgency.

Why are you doing this? What is the motivation for change? Do you have a mandate for changing the organization? Why now and why can't we wait?

You must be able to translate the philosophy that governs the values and principles into specific plans on implementation and answers to the questions in the above paragraph.

John Kofter from the Harvard Business School identified in one of his works that the number one reason that organizations fail in the effort at change is internal complacency. One of the tools of internal complacency is the "analysis paralysis" mentioned, where the perceived absence of data leads to filibusters that prevent the organization from moving forward. One of the manifestations of this is the need to revisit past decisions and re-ask questions already addressed.

From my experience the likelihood for this organizational complacency is directly tied to the following:

  • There is the lack of a crisis situation or other equally problematic event(s);
  • There is a lack of demanding performance standards with the concomitant lack of accountability for low performance;
  • There is a lack of demands for change from external stakeholders.

Fundamental Issues, from philosophy to practice:

My experience has led me to conclude that you can divide people into one of three groups whenever you are talking about system change. The first group includes people who have been waiting for you to catch up with them. They have been waiting for the changes and may be a little disappointed that you are not moving as fast as they may want.

The second group includes people who have made up their minds that under no circumstance can they agree with or support what you want to do. Ironically, we spend a considerable of time trying to convert them to "our way of thinking", often at the expense of the third group.

The third group includes people who have not made up their minds. They may find the change desirable yet are apprehensive. This group requires you to convert the philosophy that generated the vision statement, the guiding principles and the mission into concrete and detail-oriented plans.

A simple lesson learned along the way was to spend far less time with dinosaurs and more time with the people wanting and needing assistance in translating a philosophical shift into day-to-day practices.

What are some examples?

Consumer-directed supports require organizational reconfiguration, additional system supports and the elimination of some practices. The core question is whether the organization is ready to make such changes. Some issues to consider:

  • Just what does 'consumer-directed services' mean in New Mexico; what are the parameters both in terms of services that will be 'directed' and the fiscal limits that will be allowed;
  • Do you have the infrastructure to support the definition adopted, specifically for participant budgets rather than traditional contracts for services;
  • Does the organization really have the will to make changes, especially regarding control of fiscal resources;
  • What is the plan regarding transitioning from program/slot driven" capacity to participant-control;
  • What if the person with developmental disabilities or their family prefer the existing model of support;
  • What role will substitute decision-making have and how will this process be monitored;
  • Can the infrastructure support a shift from a supply centered to a demand centered system
  • What is the role of fiscal intermediaries, who will provide that function and who will monitor;
  • How will Medicaid funds be incorporated into a participant budget;

Risk Management. Quality of Care and Quality of Life

Quality Assurance is a central component of any system. Movement towards a self-determination model and consumer-directed support system raises numerous questions specific to what components should make up such a system.

A simple lesson learned is that one of the most fervent challenges is the one that focuses on concerns and allegations that the changes envisioned will come at the expense of people with developmental disabilities' welfare. A common concern is that an institution (e.g., an ICF/MR or a Group Home) provides a level of safety, surveillance and monitoring lacking within supportive living or other alternates. You need to prepare for a response.

Quality of Care and Quality of Life can be seen as opposite points on a continuum of support. Quality of Care centers on health, safety, accidents and other indicators that aid in defining one's overall welfare. Quality of Life centers on friendships, relationships and other indicators that are valued by the person such as freedom to come and go. There is a tension between these points as often rules and regulations that are focused on ensuring Quality of Care set standards and requirements that may comprise one's Quality of Life. Organizations along with all the stakeholders must decide the balance between these points, what are acceptable risks when public funds are used to support an individual.

Jim Conroy's work especially on "valued outcomes" may be worth your time, if you are not familiar.

What are you buying, from capacity to outcomes:

Most contracts for support services center on capacity with requirements for general compliance with an agency's rules, fiscal reporting and similar standards. This approach will not suffice for consumer-directed supports. When resources are placed under the control of people with developmental disabilities and they in turn can choose the intensity and frequency of supports, different system requirements are needed:

  • The ability to establish an individual rate for each person in need of support;
  • The ability to ensure that each person has knowledge or access to information needed to make informed decisions;
  • The ability to design and implement a system of accountability for the use of public funds.

Courage to slay dragons:

Robert Kriegel and David Brandt wrote an excellent book titled Sacred Cows Make The Best Burgers. The essence of their work is that all organizations have procedures and practices that are viewed as untouchable but no longer have any functional purpose within the organization and in fact may be counter to the new direction. Yet they remain often as barriers to the change you wish to implement.

A challenge you face is to actually rid the organization of these barriers. This is easier said than done often because many of the procedures tend to be tied to the image of the organization. Without a change, however, your new procedures may not have a chance, in particular regarding the new policies and procedures that are required for the successful implementation of a self-directed system.

From Leader-driven change to the "Invisible Person".

Everything starts someplace and significant reform such as transitioning to a consumer-driven system requires a champion, someone who will be the point in the initial change effort. The person will explain the reasons for such a transition effort and offer the benefits and the anticipated outcomes; the person will explain the urgency and why this change must happen sooner rather than later; the person will explain the guiding principles and answer the initial questions. Then and most importantly, the leader of the effort must begin transitioning the "ownership" to a broad-based stakeholder group. The ownership must become system-wide. This does not mean that the leader abdicates his/her responsibilities as the "change agent," rather the leader shifts from the foreground to the background. I have described this as an architect who after designing the structure of a house gives the plans to a master builder. The master builder task is to translate the vision of the architect to the reality. Each knows that the original plan may require changes along the way.


The introduction of a consumer-directed system is not a program and it is not a project. It is a commitment to change how your organization constructs, delivers and monitors supports to people with developmental disabilities. Your challenges are not unique to New Mexico yet the structure of the solutions must be tailored to the cultural values of the organizations and communities that comprise you state.

The purpose of this document is to share some thoughts of lessons learned along the way. I have found some guiding principles helpful:

  • We tend to believe that what we established will last forever. Institutions were the answer in the early 1900s and when they were viewed as inadequate, the ICF/MR program flourished. Then came the group homes as the new answer to the cost and inadequacies of the ICF/MR program and now we discuss supported living as the preferred option to group homes. The reality is that services and thinking evolve and change. I have learned that experience changes expectations and organizations must adapt to be successful.
  • There needs to be a strong mandate for change. If it currently does not exist, you need to create it. This is especially true if there is no crisis looming.
  • Be prudent and smart in selecting the first installment of the any change. Pilots are good if they are well constructed.
  • You need to build a powerful case for change. Why are you doing this is one of the most frequently asked questions. Your values and philosophy are good foundations for an answer but not completely adequate.
  • Let the stakeholders in particular the consumers drive the change.
  • Communicate continuously and engage in true conversations as often as possible.
  • Reshape your policies and procedures and resist the seductive notion to incorporate consumer directed as another program and option for people with developmental disabilities.
  • Encourage, support and advocate for open dialogue with all involved.
  • One of the barriers to change is the reality that new skills may be required on the part of staff. Encourage skill building and acknowledge the level of support that will be offered to ensure success.
  • Kill old processes that contradict your direction.
This paper available from Roger Deshaies, Consultant, William M. Mercer, Inc., 3131 East Camelback Road, #300, Phoenix, AZ 85016, Tel: 602-522-6549, Fax: 602-957-9573, E-mail: