Special Needs Planning: Introduction
This is the first installment in a number of articles which are based upon my book Special Needs Planning: A Simple Guide for Families in New York with a Loved One with a Disability published by Graylake Publishing and released in the third quarter of 2014. It is a response to inquiries from family members and those who support them about how best to provide for a loved one with a disability. While my primary focus is the legal aspects of the process: developing an Estate Plan and drafting Wills and Supplemental Needs Trusts, I realized over the years that the process for providing a secure future for a loved one with special needs was far broader in scope. After numerous discussions with other professionals in the field, research to support my law practice, and my long association as a Board Member of several not-for-profit organizations which support persons with a disability in the Rochester, NY region, I developed a feel for the breadth of topics. I wrote the book as a resource to parents and their supports to provide a foundation for more probing questions.
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 AVision 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 supported housing or in the community; from relying upon the primary care giver to securing outside supports.
The purpose of envisioning the future is to picture an environment 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 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 availability of resource 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, 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?
Ignoring a "Vision for the Future" is not a responsible option to the care giver of a loved one with special needs. But is understandable why planning is so overlooked or is always the thing the care giver will get to "when there is time." Too often the primary care giver is concerned with the immediate; handling the many events and emergencies that happen in life. Further, there are the concerns for other able children who have lives and goals of their own. Finances are usually an immediate concern and present significant constraints on a care giver=s ability to fulfill the life envisioned. There is the pressure of paying the current bills and maintaining a current lifestyle. Further, the projected costs of future care of the loved one can seem overwhelming. However; this sense of the immediate and the uncertainty for the future cannot be used as an excuse not to engage in the visioning process. It’s just too important!
The next installment of this Newsletter 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.