SELF DETERMINATION

Martha Sheldon, M.S.W.

"Disability is a part of life. Some of us going to get it young and some of us going to get it old." Ed Roberts

WHAT IS SELF-DETERMINATION?

The new "buzz word" in social services is SELF-DETERMINATION. This word is not new, but now it describes new ways of delivering services to people with disabilities and their families. As the former Commissioner of Developmental Disabilities Administration, Bob Williams, has defined SELF DETERMINATION is a "ten dollar word for choice, it is another word for freedom, a life filled with rising expectations, dignity, responsibility, and opportunity. A chance to live the American Dream." (Williams, 1989) In other words, it is a way for people with disabilities and or guardians to get control over money use for services and equipment. It is a way to give individuals with disabilities responsibilities for their lives, as well as giving people a say what kind of help is needed, where the help comes from and who will provide the help.

STORY OF THE CHEAP CHAIR:

Two years ago I made sure a new power wheelchair was in my support plan . If I did not and two years goes by and my old Porsche broke down I would have no wheels. I learned from doing support plans for others that: " IF THE EQUIPMENT OR THE SERVICE IS NOT IN THE SUPPORT PLAN, THEN I WOULD IT." Thanks to six lawsuits against Developmental Services, it took one year instead of two to get the funding for a new power wheelchair.

As a consumer of Developmental Services, I did not how much funding was for a wheelchair. I did not have the freedom to choose the vendor. Without my final say, the vendor ordered the wheelchair. When I asked the vendor when he was planning to order the chair, he said he did. In addition, it was RED. I wanted forest green. A month later the wheelchair came. IT was not right. IT was an ESSEL not a Porsche. Among other things, the chair did not fit right. In addition, I was more dependent on others because I could not charge it myself. Besides, the left wheel has fallen off the rim three times in nine months.

Since I fight for the rights for others, I really did not want to make an issue. That was until the wheel fell off the rim at midnight while walking my dog. I found out that the ESSEL cost $4,000. Three years earlier the Porsche cost $7,000. I demanded another chair. The answer came back there was no money. So I contacted the Protection and Advocacy (PA) at the Advocacy Center and got a commitment from the State that after I had MEDICAID Wavier I will get the wheelchair I choose, from the vendor I want.

BACKGROUND OF SELF DETERMINATION

Self-Determination grew out of the Independent Living Movement. Ed Roberts is the father of the movement. Ed was a quadriplegic from Polio he contracted when he was a teen. He wanted to go to college, but he was in an iron lung. Therefore, he questioned the policies relating to access and housing. Ed wanted the choice of getting an education.

By 1972, the first Center of Independent Living was in existed. Centers for Independent living are run by and for people with disabilities. Because individuals with disabilities operate them they began to ask hard questions like: Why were people with disabilities sent away to separate facilities? Why can't people with disabilities be a part of society? Why did life have be spent being fixed or cared for? In addition, why did people with disabilities were exempt from any responsibilities for themselves? Thus, development of Self-Determination began.

THE FOUR SELF-DETERMINATION PRINCIPLES:

Looking at self-determination on an objective level it is " a service reform that gives individuals with disabilities a voice to determine who will give services, how they will be given, and when they will be given." (O'Brien, 1997) Along with this definition, there are four principles of self-determination. These principles provide a philosophical foundation for change in human service systems. In addition, it incorporates the values of persons with disabilities, families, friends, and advocates.

FREEDOM - People with Disabilities have the same rights as all citizens. They will establish where they want to live, with whom they want to live and how their time will spent. They do not have to trade their inalienable rights guaranteed under the Constitution for supports or services.

In the past, most people with disabilities did not have any say of where or with whom they wanted to live. For example, many people with mild limitations lived in facilities with those who limitations were severe. Now, the majority of people with mild limitations live in the community where they want and with who they what to live with.

AUTHORITY People with disabilities will have control over the money needed for one's own support, including the re-prioritizing of these dollars when necessary. This is accomplished through the development of an individual budget that "moves" with the person.

At present people with disabilities, have very little say on how the money they is spent. A good illustration is if individual needs incontinent supplies, the support coordinator gets the supplies from a vendor that the state chooses. In the future, the authority of where to get the incontinent supplies will be up to the consumers. Thus if the supplies is less expensive at the corner store. Then from the vendor the individual can get supplies at that store.

SUPPORT -- The person with a disability will determine the organization of these resources. This means that individuals do not receive "supervision" and "staffing." Rather, folks with disabilities may seek companionship for support and contract for any number of discrete tasks for which they need assistance.

In the past and even today organizations and institutions are being given the funding to take care of people with disabilities as oppose to giving the individual the authority to hire who they want to assist them. For example, I found my own help that have been with me for five years and the state pays her.

RESPONSIBILITY - Is the wise use of public dollars. Dollars are now are used as an investment in a person's life and not handled as resources to purchase services or slots. Responsibility includes the ordinary obligations of American citizens and allows individuals to contribute to their communities in meaningful ways.

The notion of giving people responsibility is new. Both Responsibility and Freedom belongs in the same sentence. At the present, people with disabilities are not allowed or require to take responsibility for anything in their life. Nevertheless, once they have the freedom to choose, the responsibility to give comes with it. For example, I am effective self-advocate, therefore it is my responsibility to teach others to advocate for themselves. Moreover, advocate for those who cannot speak for themselves. It is important that each principle has no limitation of how they may develop the delivery of supports. Each state, for example may develop their own ways to organized the principles and assess how to implement them. The principles of self-determination will change how services will be delivered as well as having a major impact in people's lives. When a community has a philosophy that "forces a person with a disability to take what they can get, not what they want," it does not give the person with a disability a choice. Also, along the same lines is the notion of "having priories defined by Governmental personal and agencies staff ". These believe makes the individual dependent on the community. In contract, the ability to define what one's wants or needs, defining owns priorities supports a person's choice and is interdependent.

A example are sheltered workshops force their clients (employees) to go to a place they don't to be at; doing things they don't want to do. The staff sets the priorities in shelter workshops on each client's abilities. In other words, the clients do not choose the place they want to work.

In the past little time was spent on teaching "professionals" the needs, wants, or desires of people with disabilities. Thus, most professionals were afraid of people with disabilities. This ignorance about the person created the attitude the professionals knew best, and individuals were not consulted on their needs or wants. Now days, the professional is more sensitive about the person they are working with, realizing the disability is a part of the person. So the professional determines with the person the degree to which the can be a part of the decision making process. In addition, the professional explains the choices to the person and work towards the individual's independence.

Ten years a go I broke both ankles thirteen months a part. The professionals who helped me did not know how to work with people with disabilities. For example, one doctor thought I was mentally retarded. He was going to cut the cast off and send me home. Then, I got upset and told him in not so polite terms too listen to me. But, when I broke the other ankle I had professionals who worked with me, explained my choices, and asked what was best for me.

The impact of self-determination on an individual level is tremendous. If a person with a disability has a say in where they live, where they want to work, or who will help them their self-esteem will improve. Most people (whether disabled or not) who cannot make choices will feel hopeless, have self-doubt, blame themselves for things, as well as feel like "people owe them," blame others, and see the deficits in life. If people can make choices, they are hopeful, believe in him/her self, creating possibilities in life, as well as take responsibility and control for self, and see their strengths.

An illustration of the impact of self-determination has on a person with a disability is when has a say of where they want to live. Most people with disabilities will choose to live in a home in the community, not in an institution.

TOOLS OF SELF DETERMINATION

There are tools associated with the principles of self-determination. These includes individual budgets, support brokering, and financial intermediaries.

A. Individual Budget - The principles of self determination are reflected by in individual budgets. A budget is controlled by the person and their freely chosen people who supports the individual. When individual budgets are created, it is seen as an on going investment in a life of a person rather then being responsible for a life. In order for this to work the following have to be in place: 1. INDIVIDUALLY CREATED - A person with a disability with the assistance of freely chosen people who are supportive them creates a budget with the allocated funds given to the individual to obtain supports and services

2. AUTHORITY OVER PERSONNEL - The person with the disability can hire and fire personnel who provides supports and services to them.

3. FEXIBILE - The budget can be modified within approved amounts and line items can be move, created, or deleted as long as essential services are maintain.

B. Support Brokering (Independent Support Coordinator) - The Independent Support Coordinator is the linchpin to the success of individual budgets. This person may assist in plan development, organizing services and evaluating on going supports. The support coordinator's characteristics may include:

1. INDEPENDENCE FROM SERVICE PROVISION - To avoid both the appearance and the reality of conflict of interest, it is important to keep this function separate from any form of service provision.

2. REAL AUTHORITY - The function of the support coordinator is to carry some authority that is recognized, if this person is representing a person with a disability adequately.

C. FINANCIAL INTERMEDIARIES - Simply, financial intermediaries are places (banks) individual budgets gets parks. The duties of the financial may include: check writing for all bills, taxes, and other things depending on the individual budget. The individual will hire the financial intermediary. This professional will be accountable for insuring all federal and state laws are followed.

1. Individual Budget Isolation - Simply, it means that a budget for a individual is isolated from any other funds, especially from the traditional service providers contracts.

2. Conflict of Interest Free - This means that the financial intermediary does not have a conflict of interest of duties in their role.

3. Close to the Person in the Community - To the extent possible, the financial intermediary should be a generic neighborhood, community base organization such as a bank which would enable the person with a disability create a relationship with people and their community.

DRAW BACKS OF SELF DETERMINATION

CONCLUSIONS

Although providers may not like the shifts in paradigms, self-determination is going to be here to stay. It is up to people with disabilities and professionals working together to educate those who are not aware that people with disabilities have the freedom, the authority, the support, and the responsibility to control their own lives. Also, it is the responsibility of those who can speak; to speak for those cannot make their choices known and make sure the choices that are made do not hurt one self or others.