AAMR F.Y.I. Talks to Cathy Ficker Terrill

This is the second in a series of interviews with members of the American Association on Mental Retardation, representing a range of professions in the developmental disabilities field.

AAMR F.Y.I.: You have been a successful leader at the state level and in the private sector. What in your opinion does it take to be an effective leader?

Ficker Terrill:Successful leadership requires that the focus always be on the vision and mission. Leaders need to work hard to bring the power of the customer into the center of the business. We must find out what people envision for their future and let that guide strategic planning and systems changes. There are so many distractions in day-to-day operations that it is critical to keep your focus on the vision and mission. At every board meeting, the mission should on the back of each board member’s nameplate. Staff and board members must have business cards with the mission clearly displayed on the back of the card. Once you identify your mission then allow the stakeholders to provide input into your strategic plan. Follow the plan, while at the same time keeping it a dynamic document, and celebrate your success on a regular basis.

AAMR F.Y.I.: Having served on many non-profit boards and with extensive experience in strategic planning for non-profits, what would you say is the most commonly made mistake by non-profit organizations?

Ficker Terrill: Most strategic plans tend to sit on a shelf or fail to be strategic. It is difficult to get excited about a strategic plan that is not full of vision. Set your mission, create a targeted plan that is filled with hope and opportunities, and find leaders to help you accomplish exciting goals. Communicate with internal and external stakeholders regularly and solicit ongoing ideas and possibilities. Boards need to be challenged to be a source of leadership not only in the arena of fund raising, but also in the areas of expertise each person brings to the table. Seventy five percent of every board meeting should be focused on solutions for the future, rather than dwelling on the past or the "crisis of the day."

AAMR F.Y.I.: Any major lessons learned you’d like to share from your experience as board member?

Ficker Terrill: I believe that partnerships help organizations to create new opportunities and unique challenges. Non-profit organizations are breaking away from traditional operations and developing innovative enterprises. Non-profit centers are emerging in local communities. These centers differ in size and management structure. What they share is a mission to save money by sharing building costs, equipment, or administrative expenses. Other partnership approaches emerging among non-profits include networks and cooperatives. These partnering non-profits share resources such as shared payroll systems, insurance pools, and human resources. All of these approaches have as their goal to benefit from the economies of scale of large organizations, while maintaining the mission and community responsiveness of small organizations.

AAMR F.Y.I.: You run a multi-million dollar nonprofit community service agency. What are the common challenges you encounter? What is your typical day like?

Ficker Terrill: There is no such thing as a typical day. If your organization dedicates itself to continuous quality enhancement, then opportunities will always be at your door. The true leader embraces opportunities rather than focusing on barriers.

This is a time of unprecedented opportunities. People are living more than a century, the World Health Organization believes that we will conquer disease, there is "gold among the gray" and people are living in smart houses. Smart houses are technological wonders. You can adjust home temperature controls and cooking times offsite with remote switches. Appliances convert from refrigerators to ovens with the push of a button. You can scan fresh food into your refrigerator, the refrigerator can be programmed to reorder dairy products and fresh fruit when the date codes expire. Multiple electrical appliances can be switched on and off from a toggle switch on a joy stick. Email talks to you. Vacuum cleaners propel themselves across your carpet. Individuals with mobility concerns can clean house, switch off the CD player, switch on the TV and start the oven without ever leaving the comfort of their chair.

Smart organizations look to these opportunities as exciting challenges. It is important to look at future trends outside the field of disabilities and then analyze how these trends will impact the lives of people with disabilities, their families and the communities in which they live. There are many different trends, such as the aging of the huge baby-boomer population, which will impact the lives of people with disabilities in the future. We must have foresight and develop innovative systems to ensure that these major social, technological and economic changes will have positive impacts on people with disabilities.

AAMR F.Y.I.: As an agency director, I am sure you are constantly thinking of recruitment and retention issues. Can you share some of the more innovative employment strategies you use to retain staff?

Ficker Terrill: Information sharing and training are critical in order to create a dynamic work environment. Employees have access to all kinds of information, whether you as a leader make it available or not. People used to think that if they controlled the access to information, then they would be more powerful. Now information is more readily available in multiple formats to everyone. Staff needs to be able to access information through technology in order to develop solutions for tomorrow. There are innovative models throughout the world, and we need to be open to alternative solutions for supporting people.

Staff training helps to bring people along. Staff wants to develop new job skills and have access to flexible positions. It is important to invest in staff training. The training should assist new staff to acquire core competencies rather than simply participate in training. Staff needs to be cross-trained so that they are able to respond to multiple tasks.

AAMR F.Y.I.: Apart from leading organizations, you have successfully led grassroots efforts on behalf of families, especially to get key legislation passed in family support, early intervention, and the transition arenas. How do you become an effective advocate for people with developmental disabilities? How do you successfully advocate at the state level and build consensus among legislators, advocates, consumers, and other varied groups?

Ficker Terrill: Advocacy comes from the heart. You have to believe in your mission. You have to believe in the people you support. Effective leaders develop a vision based upon the needs to the people. That vision is simple and it shared with everyone. People are supported by the leader to understand that everyone can affect change. People need to be given strategies to affect change together.

Too often, people who look to make changes are seen as “idealists”, meaning that they are not being realistic. The realists look upon the idealists almost as children, who have failed to “grow up” and see the world the way they understand it to be. Idealists have a vision for a tomorrow that is different the realists perception of the world. To the “realistic” people I say this, “ In the past you would have told me that there could never be a democratic election in Poland or Hungary or that the Communistic parties throughout Eastern Europe would lose political control or that the Berlin Wall itself would crumble and fall. Yet today, those changes are quite real. Fortunately, the people in those countries did not listen to the “realists” and instead took the future into their own hands in order to affect change. The distinction between what is possible and what is not possible is always changing. As we advocate to open communities to all people, we always keep our hopes and make plans for the days when the walls that have stood for so long- the lack of services wall, the segregation wall, the waiting list wall, the money does not follow the person wall, and all the walls of segregation and dependency finally crumble.

AAMR F.Y.I.: For example, you worked with families in the state of Illinois to create an empowerment model where families could plan the future of their child with a disability. Could you talk a little bit about this initiative?

Ficker Terrill: In the words of Margaret Mead, “Never doubt that a small group of thoughtful committed citizens can change the world: indeed it’s the only thing that ever has.” You can and will make a difference. But the important question is, Shall we expend our energies to help people or to empower them? The empowerment of people with disabilities and their families has forged a new civil rights movement.

Before we crafted legislation, we met with hundreds of family members across the state to receive their valuable input. The families identified their greatest need as future’s planning for their child with a disability. They asked us to design a model that was person directed and individualized - based upon the needs of the family, flexible to accommodate cultural, economic and geographic differences, with cash or a fiscal intermediary and where the customer defined quality.  I simply served as the instrument to design a program that met their expressed needs. All families worked together to change the system.

AAMR F.Y.I.: You have traveled around the world setting up developmental disability programs and initiatives, including the Kingdom of Saudi Arabia, Poland, and many of the Baltic states . What has this experience been like for you?

Ficker Terrill: We need to look for new ways to partner. Leaders need to look at global changes. I have had the opportunity to do volunteer work in many different countries from Eastern Europe to China to Russia and Japan. Many of these countries previously were governed under Communist rule. The people in these countries had few freedoms. Post-communist countries are looking to the Western world for solutions to their problems. In conducting strategic planning to establish new goals for the future, it was interesting to note a common theme of need. Families, people with disabilities, social pedagogues, and government officials express similar concerns about their capacity for systemic change. At a conference in the Baltic States, the participants indicated a need for capacity building. They indicated a need: to learn how to make choices; to learn how to access information and then there is a need to learn how to turn that information into power; we need to know how to dream and how to plan; and we need to learn that it’s okay to speak for ourselves and that we won’t be hurt for doing so. These issues and concerns are in line with what self-advocates in the United States have been saying for the past ten years.

AAMR F.Y.I.: The whole field is moving toward community living and supports, and part of your work at the Ray Graham Association for People with Disabilities is developing community programs. As you know, AAMR has developed the Supports Intensity Scale for persons with developmental disabilities so that services can be based on individual needs rather than deficits. Where do you see this trend headed and what can associations such as AAMR do to perpetuate this trend?

Ficker Terrill: We all know that support needs vary across individuals. The Support Intensity Scale is intended to provide a valid measure of the intensity of each individual’s support needs relative to others. This tool is in line with the basic principles of self-determination, individual choice, and the supports people need. The focus of supports is now looking at individual personal outcomes. The connection between personal outcomes and the new scale makes sense. The challenge for organizations is to support individuals related to person-directed outcomes and the support that they require to be successful. As the growing trend for people to control their own public funding increases, individuals with disabilities and their families will be evaluating service providers on how well we support them in achieving their personal outcomes. If we fail them, they will take their money and walk, just as it should be.

AAMR F.Y.I.: By the way, do you think that the field of developmental disabilities in general is doing enough to train leaders for tomorrow?

Ficker Terrill: A challenge for many non-profits is to recruit talented leaders. It is estimated that by 2016, nonprofits may need as many as 80,000 new leaders. We need to not only train leaders for tomorrow within the nonprofit field, we need to reach out to retiring staff from the corporate world to bring their time and talents to nonprofits. There are leadership training sessions held in every major city on any given day. We need to look outside of the field of developmental disability and utilize excellent training that is available for all leaders. We also need to encourage staff to read great books like, A Passion for Excellence, Thriving on Chaos, Negotiating the Future, and The Challenge of Organizational Change.

Leaders need to be flexible. Tomorrow’s leaders will see change as an opportunity, not a threat. In order to survive, it will be critical to build diverse teams. It will no longer be enough to have energy. Leaders will need to energize others. As the future evolves, it is necessary to recognize the need to alter leadership techniques to keep pace with youth and the next generation. The next generation of employees have very different cultural values and expectations. The new generation of customers with disabilities also have very different expectations.

AAMR F.Y.I.: It is clear that you are not afraid of challenges and you have a high level of enthusiasm and dedication in what you do. What motivates you?

Ficker Terrill: I am motivated by a sense of justice. Before President Lincoln freed the slaves in this country, he did not study whether inclusion of integration would work. He knew that it was the right thing to do. This country is founded on the principle that all men and women are created equal. Rather that study the issue of whether spending money on segregation and dependency are wrong, I am motivated to focus collective energies to create opportunities for independence and inclusion for all.

Cathy Ficker Terrill can be reached at cathyfickerterrill@yahoo.com

To learn more about AAMR, visit www.aamr.org. To reprint this interview or excerpts from the interview, please contact annap@aamr.org.