What is the definition of Self-Advocacy?

Self-Advocacy means speaking up for yourself about the rights and responsibilities in your life. People who speak up for themselves are called “Self-Advocates” and having once learned how to speak up for themselves can assist others to do so as well.

The process of becoming a Self-Advocate allows the individual to educate themselves on issues that are of importance to them. For example, if a person finds that they will need to ride a bus to work, but finds that the service does not run when they need it, can work with others to make changes to the service. First, they probably will need to find out more about the problem, such as:

  1. Are other people being affected?
  2. Are there other options?
  3. Who are the best people to contact in the organization, in order to make a difference?

Once a person educates himself or herself on an issue, they might then seek out others that are being affected, and try to develop a strategy for improving the service for others. Self-Advocates use many ideas to capture the attention of officials or other powers that be. Some use petitions, gaining the signatures of others to express their dissatisfaction. Others will host meetings, so that others can express their opinions. There is no right or wrong way to organize others, but the importance is how the group comes to the decision together. The POWER is in the group working together to make a difference in people’s lives.

For people with developmental disabilities, Self-Advocacy is an international movement, which focuses on many different issues. Organizations such as People First, The Arc, and many other community-based organizations are creating avenues for people to take more control over their lives.

The impact of these groups has been far-reaching, on an individual and global basis, and continues to this day. There are chapters of People First throughout the United States, as well as in New Mexico, working on the many issues that affect people’s lives on a daily basis, making a change, making a difference!

What is Self Determination?

Self-determination means that individuals with disabilities have the FREEDOM to plan their own lives, pursue the things that are important to them and to experience the same life opportunities as other people in their communities. Self-determination has three primary, interrelated meanings for people with developmental disabilities.

1. Self-determination is a shared effort where individuals and those important to them work to create a life in community. This is regardless of the political, cultural, or bureaucratic restrictions that limit where people live, how they spend their day, and the choices considered to be within their abilities and reach.

Example: Jim currently lives with his family and attends a local day habilitation program. Recently, Jim has expressed that he would like some things in his life to change. His friends and family get together to discover what dreams and ideas Jim has for his future. They learn that Jim does not like the day program, wants to earn money and live in his own home. Together as a team they begin to explore options and resources to make Jim’s dreams come true.

2. Self-determination is a political movement by which people with disabilities, their families and their allies are working on the political, bureaucratic and cultural changes needed for people with disabilities to be fully accepted as citizens and members of their communities.

Example: Individuals with disabilities learn that the local bus company is cutting back on services. They organize a letter writing campaign to the city council and the Mayor’s office. They also attend a city council meeting and voice their concerns on how the cuts will affect their ability to go to work, go to church and meet their friends at the movies.

3. Self-determination refers to an approach to restructuring the way supports are made available to the people who need them.  The goal of this effort is not to create a broadened menu of set service alternatives, but rather to stimulate, by shifting control to the individual, the ongoing development of new options for support that are defined by the consumer (Moseley, 2001).

Example: In New Mexico, many individuals with developmental disabilities receive services on the Developmental Disabilities (DD) Waiver. The DD waiver offers a comprehensive menu of services including residential, employment and therapies. The individual’s team makes decisions about services.

There is a movement in New Mexico to create a Self-Determination Waiver option. This means that a person would have an individualized plan and budget that he or she would actively manage. The individual could choose his/her own supports or choose a support broker that he/she hires and supervises. Supports could be purchased through traditional DD provider agencies and/or through non-traditional providers such as friends, family or other community members. Funds could also be used to access generic services within the community.

Medicaid dollars cannot be given directly to individuals so an individual would receive funding through a fiscal intermediary. A fiscal intermediary is an agency or individual (i.e., Certified Public Accountant) that would receive the funds from the State Medicaid program and administer them on behalf of each individual. A broker is an individual who would help individuals find and select supports and services. Fiscal intermediaries and brokers would be independent of case management or provider agencies.

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The Arc Moving Forward Annual Conference: June 22 - 23, 2018!