Having an adult child with “special needs,” and planning ahead for his or her care, is a concern for parents throughout the child’s lifespan. Most of these adult children are extremely dependent upon their parents, counting on them to provide fully for their safety and well-being, as well as love and encouragement. As the parents begin to age, it is necessary to have a plan of care in place for both the adult child and the parents.
Planning for the Care of Your Adult Child with Special Needs Takes a Team
by Linda Fodrini-Johnson, MA, MFT, CMC – Aging Life Care Association™ Member and Fellow of the Leadership Academy
Coming up with a plan for who will take care of their child after they are gone is the greatest struggle for parents of children with special needs. The “What If’s?” are daunting.
Most parents of special needs children have learned to become resourceful in finding ways to make their child’s life the best it can be. They’ve developed special skills for solving problems and finding solutions. They know their child better than anyone and their love and patience know no bounds. They can’t imagine anyone else being able to care for their adult child like they can.
As some of these parents age, their special needs children can actually begin to help their parents. Some higher-functioning adult children with special needs might assist them with light housekeeping, simple meal preparation, laundry, or even personal care.
However, for parents caring for an adult child with special needs of lower functioning abilities, a different scenario can develop: one where the parent can no longer meet the ongoing care needs of his or her adult child.
In either scenario, an Aging Life Care Manager™ can be that much-needed link, helping the “Special Needs Family” plan for the future, setting up a contingency plan for short- or long-term options for ongoing care of the adult child with special needs.
The Aging Life Care Manager works with the family, an attorney who specializes in either Elder Law or Special Needs Planning, and a financial planner to create options for a suitable Plan of Care which meets the needs of everyone in the household. The best plans are based on the family’s set of values, resources (both human and financial), entitlement benefits, and local services.
On an ongoing basis, the Aging Life Care Manager provides a second set of skilled eyes on the care situation of the special needs adult, making sure that the plan remains appropriate, that the care is of excellent quality, and that all needs — physical and emotional — are being met. In some cases, the Care Manager operates in a dual role, advocating for both the adult child with special needs and his or her parent.
To locate an Aging Life Care Manager near you and learn how he or she can help with the care of your adult child with special needs, visit aginglifecare.org.
About the author: Linda Fodrini-Johnson, MA, MFT, CMC, is the Founder and President of Eldercare Services in Walnut Creek, CA. She is also a partner of the VillagePlan. Linda is a Fellow of the Leadership Academy and a past-president of the Aging Life Care Association™. Linda has over 30 years experience working as a Care Manager. You can reach her at linda@EldercareAnswers.com, or connect with her via social media: Facebook, Twitter, and LinkedIn.
This blog is for informational purposes only and does not constitute, nor is it intended to be a substitute for, professional advice, diagnosis, or treatment. Information on this blog does not necessarily reflect official positions of the Aging Life Care Association™ and is provided “as is” without warranty. Always consult with a qualified professional with any particular questions you may have regarding your or a family member’s needs.