What is Self-Direction?

January 19, 2010

What is “self-direction”? If you’ve heard the term or have been following this blog and you’re not really sure that you understand what self-direction is, the following should provide the information you need.

There is an excellent explanation of the basics of self-direction on the TASH (The Association for the Severely Handicapped) website. It was written by a group in the State of Maryland but is specific to the topic rather than the state. http://www.tash.org/mdnewdirections/selfdirection.htm.

If you Google “self-direction”, “self-directed services”, “self-directed supports”, or “self-determination” you can access information from many states as well as countries all over the world. In New Jersey, we have several self-directed programs serving individuals with developmental disabilities. If an individual with DD currently lives in the community, they will be interested in the Real Life Choices program and the Personal Preference program.

To find out about self-direction in New Jersey, go to the Division of Developmental Disabilities website at http://www.state.nj.us/humanservices/ddd/programs/selfdirected/.  You can access specific information about Real Life Choices on the Neighbours, Inc. website at http://www.neighbours-inc.com/RealLifeChoices/RLC_summary.html.  Neighbours provides support coordination for the Real Life Choices program.

On the Family Support Center of NJ’s website http://www.fscnj.org/rlc.html,  you can get even more detail on Real Life Choices as well as search for providers of services to individuals who are self-directing, find out details on how self-direction works, and find answers to many other questions. There is also a link to information on just what services and supports your budget can be used to purchase and a link to a sample Essential Lifestyle Plan (ELP). If your child went through school in the U.S., they probably had an Individualized Education Plan (IEP). The ELP is the planning document used in the self-direction process. I often felt that schools considered an IEP just a bunch of pages required by the government, rather than a useable, working document to guide the education of a child with special needs. Thankfully, the ELP is a positive, common sense approach to thinking through and meeting the needs of an individual with DD.

To find out more about the Personal Preference Program, which is available to individuals in New Jersey who are eligible for Medicaid Personal Care Assistant services go to http://www.state.nj.us/humanservices/dds/projects/ppp/

A historical note: self-directed services and supports are based on the Five Principles of Self-Determination developed in 1996 at the University of New Hampshire by T. Nerney and D. Shumway. They are:

The opportunity to choose where and with whom one lives as well as how one organizes all important aspects of one’s life with freely chosen assistance as needed

The ability to control some targeted amount of public dollars

The ability to organize that support in ways that are unique to the individual

The obligation to use public dollars wisely and to contribute to one’s community

The recognition that individuals with disabilities themselves must be a major part of the redesign of the human service system of long term care.

I hope this information has helped you understand the ideas and processes involved in self-directing services. From what I have heard and read in the past few years, this is the way all services will be provided in the future. I think this will help our communities and neighbors recognize the basic civil and human rights long denied to individuals with developmental disabilities.

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