Importance of Life Care Planning

Planning for the Future: Life Care Planning is an Important Tool for Families with Special Needs

By: Kelley Stokesbary, CLCP, MSOTR/L
Stokesbary Life Care Planning
E-mail: stokesbarylifecareplanning@yahoo.com
Phone: (859) 396-5612

As the parent of a child with Down Syndrome, you understandably worry not only about meeting your child’s needs currently, but also in the event that something should happen to you rendering you incapable of providing care. Knowing exactly what those needs are currently, as well as in the future, can be difficult for a parent to determine. Are you doing everything you can to promote your child’s independence? What options are available for additional therapy services? Should I be consulting with specialists, and if so, whom? Where will my child go after high school? Will she be able to live on her own? Who will care for him after I am no longer able? Frequently parents simply do not have the time or the resources available to determine and plan for such needs in the face of daily care-giving. Fortunately, there are specially trained individuals known as Life Care Planners who are capable of helping you navigate through these difficult questions.

A Life Care Plan is a “dynamic document that provides an organized concise plan for current and future needs with associated costs” for individuals who have Special Needs (Source: International Academy of Life Care Planners). Basically, a Life Care Plan is a “roadmap” that promotes function, independence, and quality of life for an individual with Special Needs by outlining the medical needs and the financial burden associated with those needs. A complete Life Care Plan covers 18 categories ranging from physician and specialty appointments to therapy services to transportation and housing needs. It is very detailed and provides a clear look at what needs to be done, when it needs to be done, and why it needs to be done to promote the individual’s independence and quality of life. While the full Life Care Plan is the optimal choice, if desired, the Life Care Plan can be abbreviated to cover only those areas particularly concerning the parent – frequently the areas of education/vocation and home care vs. facility care. In a recent MetLife study, over 50% of parents of adult children with disabilities voiced concerns about their child’s living situation and finances after the parent’s death. Despite that, less than 50% of those parents had created a will, estate plan, or Special Needs Trust, and less than 10% had created a Life Care Plan. A Life Care Plan, when combined with a will, estate plan, and Special Needs Trust affords both the parents and the child with Special Needs peace of mind.

Life Care Planning is still a growing profession with only a handful of Certified Life Care Planners in the state of Indiana. In choosing a Life Care Planner, look for a health care professional who has experience with the Special Needs population. Consideration should also be given to the Life Care Planners professional background – are they still practicing in their prior healthcare profession or are they solely completing Life Care Plans? For example, hiring a Life Care Planner who is an Occupational Therapist and is still actively practicing Occupational Therapy ensures that the Planner is current with new theories and technologies. Choosing a Certified Life Care Planners versus a Life Care Planner who is not certified ensures that the Planner has met the national credentials and is held to a Code of Ethics and Standards of Conduct. Lastly, consider the cost – is the Life Care Planner charging an hourly rate or a flat fee? Both methods are commonly utilized, but if an hourly rate is being charged, ask for an estimate and a maximum fee amount. The cost for a Life Care Plan for a Special Needs individual typically is equivalent of having a will created.

Being proactive about developing a Life Care Plan certainly puts some work on your shoulders initially. However, not having one could mean more work, more stress, more problems to resolve, and more decisions to make under pressure – being reactive as situations arise again and again throughout life. So, take a deep breath, relax, and let a Life Care Planner help. For a complete listing of Certified Life Care Planners in Indiana, visit http://www.ichcc.org/clcp/directory.asp?w=1&l=17.