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Wendy Emerson
/ Categories: By George H. Gray

Special Needs Planning Newsletter - Issue 1

Caring for a loved one with a disability can be overwhelming at times. Care givers spend much of their time dealing with the immediate. To truly provide for a loved one with a disability, the care giver must deal with the future: they must develop a “Vision for the Future.”

The vision need not be precise; indeed, in the early years in the life of a loved one it is impossible to see his or her future with great precision. Nevertheless, a care giver must envision what a loved one’s life will be like as he/she transitions from early childhood to teen years; from teen years to college or job; from living at home to living in a group home or in the community; from relying upon the primary care giver to securing outside supports.

The purpose of envisioning the future is to picture the community in which a loved one reside in a community which is appropriate to his or her needs, capabilities, financial resources and wishes for a fulfilling life. It envisions a place where the loved one has significance in the eyes of others and where a “circle of support” provides him or her the financial and human resources to not merely exist, but to thrive!

A “Vision for the Future” is not “a one time” event, but rather it is a lifelong process involving the loved one with special needs and his or her care givers, teachers, service coordinators, friends and family. It also involves legal, accounting, banking and medical professionals who are important in the life of the loved one and care givers as they deal with the present and plan for the future.

Care should be exercised to insure the process is “person centered.” Remember the vision for the future is a plan for the loved one with a disability; it is not a problem to be solved for the convenience of others. Therefore, to the extent allowed by the loved one’s abilities, the visioning process should be a conversation with the loved one with a disability not about him or her.

A “Vision for the Future” must consider planning for the legal issues, financial challenges and resource limitations presented during the lifetime of a loved one with a special need. What are the abilities, hopes and dreams of the loved one with a disability? What are the resources, both public and private, available to enable this vision of the future? Who will be involved in making the vision for the future a reality? Who will assist to effect the plan for the future? Who will be available to “step up” on the death or incapacity of a care giver?

These three elements of a “Vision for the Future;” legal, financial and resources, are best explored with the assistance of the “circle of support” which is developed by the care giver and the individual with a disability.
While the attorney is a valuable resource to the “circle of support,” the conversation is generally conducted with many more interested parties: the loved one with a disability, his or her siblings and care givers, a trusted friend of the care giver, a person outside the immediate family who has a special relationship with the loved one; teachers; doctors; social workers, service coordinators, financial planners, insurance professionals, bankers and accountants.

There is no one “right way” to create a “Vision for the Future;” and the “circle of support” may not involve the same cast of characters for all care givers. Similarly, not all members of the “circle of support” may participate or contribute to the entire process.

The next article will look at creating a “circle of support” and how best to use it to enhance and enrich the life of a loved one with a disability.
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