What is independence and what is Independent Living? Some of you may think that being independent means that you don’t need anyone else in order to be successful, that if you can do it all by yourself then you must be independent. I would like to challenge such beliefs.
Being independent, by definition, means being self-reliant, not solo. Can you successfully navigate your community and use its resources to participate in all aspects of community life? Can you make your own choices about where you live, with whom you live, and how you live? It is by these factors that we should define independence. As Judy Heumann (advocate and pioneer of disability rights movement) said, “Independent Living is not doing everything by yourself; rather, it is being in control of how things are done.”
For many individuals who have significant disabilities it is not always an easy road to Independent Living, but armed with information, resources, and a little creativity, it is possible to create a plan where one can live safely and successful within the Rochester community. If one is willing to learn about Independent Living options and commit to a plan to coordinate those available and appropriate supports and services, then achieving independent Living is possible.. So you ask how does a person with a significant disability achieve independence and get to the point of being able to direct her own life, when her family and doctors are telling her that it would be best to consider a move into a nursing facility? My advice is that if you are not familiar with community services, and you are not getting sufficient support from natural or professional supports, you should seek the assistance of a knowledgeable disability rights advocate. Your local Center for Independent Living (CIL) is a good place to start. The Center for Disability Rights and Regional Center for Independent Living are two such Centers located in Rochester, NY. Both have a great deal of experience helping individuals find supports and services to meet their unmet needs and promote Independent Living. If you do not live near CDR or RCIL and you live in NY State, you can find a link to the nearest CIL by linking with http://www.nysilc.org/directory.html, if you reside out of state you can find a list of Independent Living Centers in your area by linking to http://www.ilru.org/html/publications/directory/index.html Once you make the connection with the CIL in your area, you will be paired with an Independent Living specialist who will work with you to develop a goal plan to begin working on your unmet needs related to your desire to live as independently as possible within the community of your choosing. Each center has experienced staff to support and empower people with disabilities to navigate the health and human service system, with the purpose of enhancing independent living. Each CIL provides four core services:
- Information and Referrals: related to disability issues and available services
- Advocacy: providing support for disability rights for the individual and at the community/systematic level
- Peer Counseling: so that people can share knowledge and experiences
- Independent Living Skills Training: so that individuals can gain skill to increase their success and achievement of community living
An experienced advocate from a CIL can help you:- assess your needs and make sense of your situation,- develop steps to achieve your preferred outcomes,- access the most useful benefits and services for which you are eligible,- strategize the steps needed to achieve your goals,- explore your options,- assist you to map out what is the best course of action needed to help you achieve your desired outcomes, and- educate and empower you to become your own self-advocate so that you can do even more for yourself in the future! The benefit of working with an advocate from an Independent Living Center is that you can become knowledgeable about the issues and services that affect your life, and gain the knowledge to give you the power to: – make educated decisions,- access information and resources,- have a range of options from which to make choices,- be effectively assertive,- speak your own voice,- think critically,- define who you are as an individual as opposed to defining yourself in terms of your disability,- show others what you are capable of, and- make changes in your own life and community!