Special Needs Planning: Circle of Support
This is the second 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. The book 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, I have realized in my work that the process for providing a secure future for a loved one is far broader in scope. One topic of great interest is “how to develop a circle of support?”
The visioning process is best accomplished with the help of a “circle of support.” A primary care giver cannot hope to “do it all on your own!” There are just too many aspects of the loved one’s life that require support, and it is likely that the loved one with a disability will out live a care giver; perhaps by decades. If a circle of support is in place and there is sufficient succession planning for key members, the loved one can be assured of help in the critical aspects of his or her life. There is not a single way to assemble a circle of support, and the members of the circle may not remain constant during the lifetime of the loved one with special needs.
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 category of participants for all care givers. Similarly, not all members of the “circle of support” may participate or contribute to the entire process.
A “circle of support” is a network of friends, family members and professionals assembled to manage aspects of the life of a loved one which he or she cannot manage. It is a powerful tool to ensure that a loved one with a disability leads a life which has meaning and which allows an appropriate level of independence. The “circle of support” must be flexible enough to adopt with changes in circumstances, to recruit new members and to reorganize, if necessary, without disassembling. When assembling a “circle of support” a care giver should think of the four functions which must be fulfilled to allow a loved one to fully realize the life envisioned. As the name implies, a circle of support is populated with persons who can be trusted.
1. Trusted to lead – The primary care givers are the natural candidates for those trusted to lead. They are the persons most involved in the life of a loved one with a disability and best knows his or her needs and desires. The leaders are responsible to recruit others to the “circle of support;” to explain to candidates the services to be performed and the support to be provided; and to monitor how and when those services and supports are provided. The leaders are the planners; envisioning a future life for the loved one and implementing the plan along the way.
2. Trusted to perform essential and ongoing services – The “circle of support” should be populated with those who will provide essential services and on-going support. The obvious candidates for this role are doctors who attend to the loved one’s medical and psychiatric needs and therapists who attend to the loved one’s physical and vocational needs. These individuals can assist in measuring the loved one’s abilities and set realistic goals for the future. Navigating the network of services and supports needed to meet special needs is at best, confusing, and at worst, overwhelming! For this reason, the primary care giver should request that the loved one’s service coordinator join the circle of support. To assist the leaders to plan, both for the near term and for the future, the care giver should identify and retain an attorney, accountant, insurance professional and financial advisor. These advisors are necessary element in setting the legal and financial plans, and they can advise on what ”is” and “is not” feasible. If the loved one has a roommate or companion, this individual should be asked to join the circle of support as one to be trusted to provide on-going support.
3. Trusted to perform non-essential or occasional services – Never to be overlooked are the loved one’s friends and members of his or her social circle. They can provide the network for the loved one’s recreational needs and serve as companions on trips and outings. They are a source of information about the loved one’s interests and hobbies that can augment the information provided by the loved one him or herself.
4. Trusted to succeed others in the “circle of support” – Life is dynamic and the challenges and circumstances of any individual’s life change over time. Likewise, the circle of support must be a dynamic organism that can change with the times. Thus, the care giver of a loved one with special needs must not only recruit individuals to fill critical roles, he or she must identify individuals to succeed to these critical roles.
The next few installments of this Newsletter concerns themselves with the three elements of a “Vision for the Future”: managing resources, implementing a legal plan, and implementing a financial plan.