Parent Summit on self-determination
Opening Remarks
Charles Moseley
National Program Office on self-determination

September 16-17, 2000

Good morning everyone and welcome to the Parent Summit on self-determination.

As one of the hosts of this conference, I am very sorry not to be able to participate in person with you today. I would like to thank Jackie Golden and the National Parent Network on Disabilities for pulling this meeting together, and for reading my statement to you this morning.

I truly wish that I could be with you today and hear of your experiences, your successes and your dreams for your children. I would also like to hear of the challenges you are facing in your efforts to change the systems you rely on for support, and of your ideas for crafting a better way of doing business.

Given the fact that you are here and I am there, however, I am afraid you will have to rely on a rather one-sided message from the National Program Office on self-determination this time. This morning, I would like to speak for a few moments about the National Program Office, current directions and plans for the future.

Where We Are Now

First of all, it is important to note that self-determination is happening. Significant and substantial changes are taking place in peoples’ lives, in agency operating procedures and in state bureaucracies across the country. The National Program Office recently surveyed the 29 states that received funding from the Robert Wood Johnson Foundation for system change or technical assistance to implement self-determination. To date, responses have been received from 13 of the 19 project states and 4 of the 10 technical assistance states. It is important to note that these results are preliminary and likely to change as more data comes in. Preliminary results from this survey attest to the impact self-determination is having across the country. For example:

• All of the 17 states reported that their service delivery systems have changed in total or in part to incorporate principles of self-determination.
• 11 states reported that people receiving supports now have the option of choosing their own support broker or coordinator.
• 11 states reported that fiscal intermediary services were now available to people receiving support and that a total of 10,751 people are currently using the services of a fiscal intermediary.
• Together, states reported that a total of 13,000 people were currently living "self-determined" lives and that they expect that number to increase to 42,000 in the next three years.

You are all probably asking yourself, "What does it mean when people say they are living self-determined lives?" In fact, the last time we asked, people told us the question was really too vague and confusing. What does it mean to live a "self-determined" life? Is this a subjective statement of how much power and control a person believes he or she has, or are there some more objective measures that can be compared from one place to another. Although these numbers sound very positive, it is important to carefully examine what they mean. In our survey we asked a number of questions about the specific elements of self-determination to develop a better understanding of the changes that are actually being made. Later this morning you will be addressing the definition of self-determination and, I hope, dealing with some of the challenges of operationalizing the meaning of the concept. There is certainly a danger that in our effort to extend the concept throughout the country, we allow the meaning to become too broad and all encompassing.

Where We Are Going

We believe that there is a growing consensus on the definition and principles of self-determination, and on the elements that are key to successful efforts to transfer power and control to individuals receiving support and their families. The Declaration on Self- Determination developed during the recent International Conference on self-determination and Individualized Funding in Seattle, the statement of Principles developed by the Alliance on self-determination and the statements crafted by states in policy, procedure, regulation and law in support of individual control, authority and decision making responsibility are examples of the growing consensus over the absolute necessity of transferring power and control to the individual.

It is important to be able to clearly describe the philosophy, goals and objectives of self-determination and to reach agreement on the outcomes that are to be achieved through the system change process. The devil, as they say, is in the details, however, and it has been our experience that while people will readily agree on the direction to head, it is much more difficult to negotiate how the dollars will be shifted, how job descriptions will be changed and how new organizational patterns will be constructed to shift the focus of support to the individual, rather than to the agency providing services.

The National Program Office on self-determination (NPO) will be moving from its current role in support of the existing funded projects to a more broader focus on the provision of targeted technical assistance to states, organizations and federal departments. Our efforts will address the practical challenges of restructuring systems to support self-determination, reforming long term care policy, and building community and economic independence. Specifically, we will focusing on the following:

• Provision of direct technical assistance to states and organizations on specific operational issues related to system change.
• Development of an easily accessible information structure that supports the wide dissemination of materials, timely response to queries for information and assistance, and the maintenance of a national database on best practice.
• Development of state and federal policy related to self-determination and self directed supports with emphasis on the development of personal and economic and self-sufficiency, through employment, affordable housing, home ownership, and asset accumulation through the use of individual development accounts, micro-enterprises, and other work incentives.

The NPO will continue our goal of expanding opportunities for self-determination through education, support for conferences, workshops and discussions.

The Challenge

In conclusion, it is important to note that people receiving support are taking a more active part in the decisions that are being made at all levels, and the message is clear:

• People are saying they want jobs, and the respect that comes with being a contributing member of society.
• People want transportation, but they want to be the ones who decide where to go.
• People want to spend time with others, but they want to choose their own friends.
• Families want help. But they don’t want someone else telling them what to do, or what they are able to do.
• People and their families want support, assistance, training and someone to be there when they need them. They do not want to be controlled, judged, tolerated or managed.
• People want and expect their perspective to be included in decisions made about their lives.

Today’s challenge is over how we will carry self-determination forward. How will we take what we have learned over the past several years into the future, how we will move the pilot projects to the traditional system.

Lisbeth Schorr in her book, Common Purpose, notes that when demonstration projects fail to have a lasting impact, it is because they have not caused the traditional system to change the way business is done to accept new ideas, new ways of making decisions and alternative methods of providing supports. What happens is that the SYSTEM just keeps on rolling. The ideas of the pilot become redefined, re-cast into the terms and processes of the traditional system, and co-opted. The words change but the day to day lives of the individuals do not.

Self determination is a broad based approach to the organization of supports. It cannot be achieved by a technical fix, although changing the way we do business is a part of it. It will not happen where people have the attitude that tinkering with the waiver or developing a fiscal intermediary alone is all that needs to take place. Self-determination will only become a reality when people with disabilities and their families, their friends and their supporters stand together to lead the process of change. I congratulate you all on your commitment, your perseverance and your dedication to the goals of self-determination. It will not happen without your support.

I applaud you for your efforts and urge you to keep going, stay hungry and make the dream a reality.