Special Needs Estate Planning for Persons with Disabilities, Part Four: Life Care Planning

Special Needs Estate Planning for Persons with Disabilities, Part Four: Life Care Planning

Special Needs Estate Planning for Persons with Disabilities, Part Four: Life Care Planning

Edward V. Wilcenski, Esq., is a founding partner of Wilcenski & Pleat, PLLC, a law firm concentrating its practice on Special Needs Estate Planning and Elder Law, with offices in Clifton Park, New York and Glens Falls, New York. He has presented on estate and future care planning for individuals with disabilities and their families at Transitions. The following series contains material from his presentations. More information can be found at www.wplawny.com.

The final step in developing a Special Needs Estate Plan is often the most overlooked. At least in theory, people appreciate the need to address the legal and financial issues discussed above. But once the parents and caregivers are gone and the assets have been protected for the benefit of the individual with the disability, many questions still remain. How should the funds that the family has worked so hard to protect be used to truly enhance the life of the person with the disability? To whom should I, as trustee or guardian, look to for advice and suggestion when the person with the disability cannot speak on his or her own behalf?

Life care planning is the process of providing answers to these and similar questions for the family members, friends and advocates who will provide assistance and oversight after the primary caregivers are gone. It begins with ensuring that personal, financial and other pertinent information concerning the person with the disability is stored in a single place and accessible for future reference. Many advocates use workbooks designed specifically for this purpose. The workbooks usually request background medical information, financial information, family history, community contacts and recreational preferences of the person with the disability. The workbooks also often request that the caregivers provide similar information about their own finances and family supports.

It is difficult to overemphasize the importance of this step in the Special Needs Estate Planning process. Consider this: If you were to get up and leave town today, right this minute, completely unexpectedly and without advance notice to anyone, including your family member or friend with a disability, who would step in to handle your affairs? Does this person know where all of your pertinent financial information is stored? Have you provided him or her the legal authority to access your funds and act on your behalf? Who breaks the news to the person with the disability? Who will step in to do what you have been doing all these years? Who stays in contact with the service coordinator or social worker? Who checks to be sure that medication is being taken as prescribed? Who will make those calls when no one has heard from your son or daughter in days, and whom will they call? If you have someone in mind, have you provided this person with the information he or she needs to carry out your wishes? Does this person know what you know about your son or daughter’s needs, preferences and dislikes?

To those who will step in and assist your family member or friend when you are no longer able to do so, a well-written Life Care Plan will be worth its weight in gold. As uncomfortable as it is for many parents and caregivers to face the subject, completing this piece of the Special Needs Estate Planning process often provides the most satisfaction and relief.

Certainly the legal and financial components are equally as critical, but in most circumstances, competent counsel will be able to preserve some of the family’s funds for the person with the disability, even if no planning whatsoever has been completed prior to the disability or death of the caregiver. This "crisis intervention planning" is always more expensive and time consuming, and will be conducted before a court as a matter of public record, but it can be done. Once the parents or primary caregivers are gone, however, the ability to prepare a comprehensive and detailed Life Care Plan becomes quite limited. There may be an Individualized Service Plan to use as a reference, a dedicated service coordinator who might have some additional personal information, or some other family member or friend who could assist in compiling pertinent information, but none of these fallback references will ever replace the Life Care Plan prepared by the person who has taken care of the person with the disability all of his or her life.

Return to this blog next week for the conclusion of Mr. Wilcenski’s series on Special Needs Estate Planning.