What Happens to My Child When I’m Gone?

Lifespan Planning

By Julia Ballantyne 

“What happens to my child when I am gone?” It is question no parent wants to think about, but is especially important when that child has special needs or developmental disabilities, and requires a team of support for his or her entire life.  Carefully planning for retirement is critical for all families, but according to a 2015 Harris Poll, more than half of Americans who pass away do not have a will, leaving their loved ones vulnerable.

For the hundreds of parents who attended Tuesday’s Town Hall Forum on Lifespan Planning for Special Needs Family, planning for the future is critical – especially in an ever-changing landscape of state and local benefits that can have significant impact on a family’s safety net of support services.

Two nonprofits in the special needs community, Gatepath and Rident Park, teamed up to host the event so parents and caregivers could “ask the experts” about a myriad of issues surrounding lifespan planning for their child with special needs. “We wanted to give parents the framework to start thinking about the options and solutions available to them in regards to lifespan planning, said Bryan Neider, CEO, Gatepath.  “The attendees listened to other families and their concerns, and gathered vital information to ensure they are on the right track.”

Town Hall Forum for Special Needs

Fear of the Unknown

Julia asked me (Jodi Murphy) about lifespan planning. It’s something you really don’t want to think about, much less deal with. It’s scary and difficult. But we have to face our fear of the unknown and make sure we do whatever we can to plan for the worst that could happen.

No one knows my son better than me. What’s going to happen to him when my I die? My husband and I created ‘Team Jonathan’ with Plan A and Plan B scenarios in the event that we are no longer able to care for him. It takes a team of family members, friends and professionals to develop a plan that will support him throughout his lifetime.

Become Extremely Proactive

Larry Grotte, the CEO and founder of Rident Park, established the nonprofit on behalf of his son Peter who developed numerous disabilities after contracting life-threatening bacterial meningitis as an infant.  “We created a vision of a residential supported living community to ensure Peter, and others with disabilities, have a safe and nurturing place to live a fulling life,” said Larry, who moderated the panel discussion at the Town Hall Forum. “My wife and I have a great sense of well-being knowing that we are doing everything within our power to give our son a stable future. We hope this forum will give other families peace of mind too.”

It’s so important that we, as parents, become extremely proactive in planning for our child’s future.

Peace of Mind Forum

Parents at the Town Hall Forum were presented with information about estate planning, acquiring supportive services, finances and personal matters for their adult children.  They also learned about:

  • the benefit of having a special needs trust
  • the elements of creating a lifespan plan
  • the alternatives to conservatorship
  • Many other topics

“We hope that this event helped families better understand the road map of choices and decisions that lie ahead on their child’s journey to adulthood,” said Bryan.

Watch the Town Hall

*The panel, held at Stanford University in the Paul Brest Hall,  featured the following experts: Daniel Cutter, Vice President, Merrill Lynch Fiduciary & Special Needs Group; Michael Gilfix, Principal, Gilfix & La Poll Associates, LLP; Mercy Hall, Principal, Hall Law Firm, P.C.; and James Huyck, Owner, James F. Huyck Consulting.

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About Jodi Murphy

I am the founder of Geek Club Books, autism storytelling through mobile apps for awareness, acceptance and understanding. My mission is to use the art of storytelling and technology to entertain and educate for the social good. I am a 'positive' autism advocate, mother of an awesome adult on the autism spectrum, lifestyle journalist, and marketing specialist.

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