Mediaplanet: What is the biggest financial challenge families who have dependents with disabilities are facing?

Kelly Piacenti: In most cases, this will be a lifelong endeavor. Grab that realization, and make it part of the plan. Your financial planning will be nothing like other families’ financial planning. I regularly meet with families to help provide guidance on the financial aspect of caring for a dependent with special needs. On many occasions, the families are significantly underestimating the financial toll that will be taken on the family. And how long that toll will continue. As your family member with special needs gets older, the financial burden tends to increase. In most circumstances, resources are very limited, and will not increase with the needs of your family member.

MP: What is the first step in financial planning for someone with special needs?

KP: Educate yourself as to the challenges that you face, and the options and resources available to you. It is very important to create a plan to meet those challenges by meeting with a financial planner who has a background in planning for family members with special needs.

“Educate yourself as to the challenges that you face, and the options and resources available to you.”

Further, you must stay motivated to advocate over the long term. Not only for them, but also for the special needs community that will help all people similarly situated.

MP: Have the financial concerns of families of dependents with special needs changed over the past five years? If so, how?

KP: Somewhat. The need to care for your loved one remains unchanged. That will always be there. But things like the rules and regulations of state and federal programs, estate and financial planning options, insurance products and medical technology are changing all the time. What might have been 'right' for a family five years ago, is no longer appropriate today. You must keep yourself on top of the many changes happening in the special needs world, and understand that they continually occur.

MP: What is the best piece of advice you can give to a family who comes to you looking for guidance?

KP: I was inspired by my son Nicky, who has special needs as a result of a brain injury, to become an advocate in both my personal and professional life for people with special needs and their families. I spend many hours working to educate and mentor individuals, communities, organizations, corporations and non-profit institutions about the challenges of financial planning for families with special needs.

In all my years of doing this, if I can provide one piece of advice, it would be to first educate yourself as to your options; make, and then continually amend a plan of action as necessary; and then advocate as much as you possibly can for the care of your loved one.

Advocate. It’s tiring. I get it. But if you do not advocate for them, who will?