Nothing in life can prepare parents for the moment when they realize their child has a special need. The initial emotional impact, which can be devastating for some families, only gives way to the unfathomable pressures of extended care giving, expensive medical treatments, family strife and, generally, life out-of-balance. For many parents, caring for a special needs child is a day-to-day ordeal that drains them of the time or willingness to plan for a future of uncertainty.
Unfortunately, stories abound of families who waited to do the essential planning necessary to ensure that they and their special needs children receive the optimum care and benefits available to them; or who inadvertently followed the wrong guidance only to find themselves facing enormous financial and legal obstacles down the road.
Such was the case with David and Celeste Mercer, the parents of three children including 16-year old Emma who was diagnosed at birth with cerebral palsy. They have struggled financially and emotionally to provide Emma with the care and attention she needs to live as normal a life as possible, realizing that she may require care and assistance for the rest of her life. Their tribulations have included marital strife, sibling jealousy, substantial lifestyle reductions, and social avoidance; all of which have taken their toll on the family and kept them out of the logic of planning.
The advice they have followed has been received piece-meal from family, friends, other parents of special needs children, and a legal clinic which provided them with a standard special needs trust. They both increased their life insurance to ensure there would be enough money available to provide ongoing care for Emma in addition to taking care of her siblings. And, they have done well to keep up with the requirements for securing available state and federal benefits which along with financial assistance from Celeste’s mother, Laurie, has kept them from insolvency.
It wasn’t until Celeste’s mother met with her attorney to revise her will to leave a more substantial portion of her assets for the care of Emma that it was revealed just how close to the cliff David and Celeste were with their planning or lack thereof. When the attorney probed Laurie on her granddaughter’s situation, she learned that just about everything that could go wrong most likely would under the current arrangements. Among the more severe problems she identified were:
Laurie convinced David and Celeste to meet with an attorney who specialized in planning for special needs children. The attorney consoled the Mercers by pointing out that they had, indeed, taken many of the right steps in securing Emma’s future but, because they were so engrossed in the “here and now,” their plan didn’t have the necessary coordination or long-term outlook required to account for all contingencies. He helped them realize this type of planning is far more complex and fraught with legal and financial obstacles if it is not done with a comprehensive approach in coordination with all other aspects of their financial life.
The Mercers were relieved when they were presented with a simple five-step process to put all of the pieces of their plan together:
By having a more formalized plan and support structure, the Mercers gain more certainty in both Emma’s and their own financial future allowing them to begin focusing on a plan for her life as an adult. There is a strong possibility that Emma will continue her education and even some likelihood of her living on her own, albeit with assistance. The Mercers need to begin investigating all options in these areas to secure additional benefits and get wait-listed for living facilities.
For families with special needs children, the stakes are extraordinarily high, and the future cannot be left to chance. Had the Mercers not met with an attorney when they did, their lives could have become unbearably difficult, and Emma’s future would be muddled with agonizing uncertainty. The few hours it took the Mercers to get their plan in place will be repaid with years of a brighter future for their whole family.
Kiplinger.com. Financial Planning for Special Needs Children. September 2016
SpecialNeedsAlliance.com. Letter of intent gives valuable advice to future caregivers. April 2019
Wrightslaw.com. A Family Handbook on Future Planning. December 2003.