Self-Determination

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What is Self Determination? 

Self-determination for a person with a developmental disability means being able to have
real control over one’s life. It is not a particular program or service. Self-determined
people have supports that are tailored uniquely and specifically to that individual.

Some people with developmental disabilities can clearly express their wishes and needs,
and are able to make choices independently. Many others can become self-determined
by having family, friends, and trusted professionals help them choose how they want to
spend their time and with whom.

For a deeper understanding of self-determination click here. Visit New York Self-Determination Coalition for transition steps, a practical guide, and more.

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How Will our Farm Reflect the Values of Self-Determination?

 

Our project in Accord is going to be one of the first of its kind to bring together self-determined individuals who choose to live on a farm together. Self determination with Budget and Employer Authority is the Medicaid Community-Based Waiver option offered to indivduals through the Office of People With Developmental Disabilities (OPWDD) in the state of New York.  The families of our farmers have come together to form an LLC- a limited liability corporation- which will own the residential aspect of the farm while leasing the land to SustainAbility Services, Inc. for the purposes of resuming our vegetable business. There will be no traditional agency presence in which all funds are paid by the state to the non-profit. In this project, the budget will stay within the control of the individuals themselves and their families. The farmers will choose their own hours to farm and they will all use their community to pursue their individual interests. We have an agreement to have a staffing company provide staffing services to the extent that each individual and their families require them. We expect that each individual and family will have different levels of need with staffing and that those needs will change over time. The individual farmers will keep budget and employer authority and when they want to move, they will be able to take the investment that their families made in the farm residence with them to pursue their next dream.

From the beginning, when we decided to start the farm, our farmers’ self-determination budget, along with other participants’ budgets, allowed us to pay for the farm manager who taught us how to farm. The farm is still being run at Planting Fields Arboretum State Historic Park in Oyster Bay by two of our farm managers under the name of Orkestai Farm (www.orkestaifarm.org).

Lucky for us when we started the farm, our neighbor had an unused greenhouse where we grew the seedlings to start the vegetable business. Also, one of the farmers who was using self determination volunteered at a food bank and the farm was able to donate over $1000 dollars worth of our organic produce to feed hungry Long Islanders who don’t get to eat many fresh vegtables. In so many ways, the farm allowed our self-determined farmers to use their individual connections in their community to help the farm grow.

Our farm will demonstrate that Self Determination can be used by people who wish to come together to live because they share a common purpose while retaining their options to pursue individual interests.

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There are many options for establishing a home of your own by using one’s Self-Determination budget. It is possible to find an apartment for one, or you can find a roommate or two to share staffing and household expenses.  For some, living in a suburban apartment alone, or with roommates, is not her dream.  They want to live on a farm.  Farms require lots of people to operate, and so it became clear to us that we had to come up with a new way for self-determination to work for everyone. And, because self-determination is a flexible system that allows the individual and their circle of supporters to think outside the box, we think that we have.

We are building a farm where people can share their interest in growing organic vegetables and operating farm businesses.  While this arrangement might not seem like the realization of individualized services, we are interested in making it so. We will have each participant who comes to live on the farm supported through individualized Self-Determination budgets, which insures that the focus remains with the individual.  There should be no “typical day” on the farm.  Each participant should have a schedule that reflects his or her own interests and capabilities.

It is also important for the farm to be looked upon as a place of choice for the present rather than a first and final destination. Some people will choose to leave, and when they do, their investment in the farm (and there will be an initial investment to help build and maintain the farm home) should go with them.  From there, they may be interested in starting another project. They should be able to use their investment to move into their next home and pursue a different life’s work.  Everyone should have the right to grow and move on. We intend to protect that right.

Sometimes, a group works- it serves the basic requirements of an individual and it allows the individual to become part of a larger enterprise. For some, who need round-the-clock care, we also see the group as a way to provide back-up staff who know them well, when needed.
 We hope that SustainAbility Farm will offer a new and innovative option for people supported by Self-Determination.

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 Self Determination Enables Individuals to Live Their Dreams, Not Someone Else’s

There are many options for establishing a home of your own by using one’s Self-Determination budget. It is possible to find an apartment for one, or you can find a roommate or two to share staffing and household expenses.  For my daughter, Rachel, living in a suburban apartment alone, or with roommates, is not her dream.  She wants to live on a farm.  Farms require lots of people to operate, and so it became clear to us that we had to come up with a new way for self-determination to work for her. And, because self-determination is a flexible system that allows the individual and their circle of supporters to think outside the box, we think that we have.

We are building a farm community of 3-4 houses with 4 people with disability in each, living with a family in community that share their interest in growing organic vegetables and operating farm businesses.  While this arrangement might not seem like the realization of individualized services, we are interested in making it so. First, we start with the original idea- our daughter’s desire to live on a farm.  Next, we have each participant who comes to live on the farm supported through individualized Self-Determination budgets, which insures that the focus remains with the individual.  There should be no “typical day” on the farm.  Each participant should have a schedule that reflects his or her own interests and capabilities.

It is also important for the farm to be looked upon as a place of choice for the present rather than a first and final destination. Some people will choose to leave, and when they do, their investment in the farm (and there will be an initial investment to help build and maintain the farm homes) should go with them.  From there, they may be interested in starting another project. They should be able to use their investment to move into their next home and pursue a different life’s work.  Everyone should have the right to grow and move on. We intend to protect that right.

Sometimes, a group works- it serves the basic requirements of an individual and it allows the individual to become part of a larger enterprise. For Rachel, who needs round-the-clock care, we also see the group as a way to provide back-up staff who know her well, when needed.
We hope that SustainAbility Farm will offer a new and innovative option for people supported by Self-Determination.