Wealth Management and Life Planning for Families Touched by Autism

To obtain a free electronic copy of this white paper in its entirety, log on to
www.legacyofloveplan.com

Financial Burdens Weigh Heavy on Families with Autistic Children

One in every 91 children in the United States has an autism spectrum disorder. (Source: Department of Health and Human Services National Survey of Children’s Health report relying on data from the Centers for Disease Control and Prevention). Study after study has demonstrated what families with autistic children already know. It is that these families carry a heavy financial burden; far greater than other families who have children with other chronic health conditions or special needs.

- The Center for Disease Control’s statistical trending estimates that by 2016, the costs of treating, educating, housing and providing other services for autistic individuals in America could reach $400 billion.

Here are some recent studies and key findings:
• A nationally-representative survey, published in the December 2008 issue of Pediatrics and involving approximately 40,000 children with special health care needs including those related to autism, found that parents of children with autism have much greater health care costs and experience serious financial difficulties more than parents of children with other chronic health conditions.

• The MassMutual-sponsored 2008 Easter Seals “Living with Autism” study found that parents with autistic children have very real financial concerns:

-75% of parents with autistic children worry about the financial support their children will receive after they can no longer support them.

-61% of these parents incurred debt to meet their financial needs.

-Over 50% of these parents were concerned about how the financial drain would affect their retirement plans.

-47% of these parents worry that the financial drain they currently experience will financial impact their ability to raise other siblings.

-Only 15% believed their child would be financial secure.

-Only 13% believed their child would be financially independent.

-Only 12% believed their child would be able to manage some or all of
their finances.

Many Families with Autistic Children Have Made No Plans

Even more sobering than these statistics is the fact that many parents of children with autism have no plan in place to address these very real concerns. The same “Living with Autism” study found that:

-78% do not have any form of Life Care Plan.

-56% did not know of any financial professional with the expertise to
address these needs.

-25% have done planning at all.

-Less than 20% have created a special needs trust.

Questions to Guide the Wealth Management and Life Planning Process
for Families Touched by Autism

Very often, life’s most important decisions begin with asking the right questions. For families touched by autism and concerned with their financial well-being and the overall well-being of their children with autism, the questions are sometimes difficult to form. For affluent families with complex finances, there are greater levels of need. Their questions may include some of the following:
• How do I establish a plan that will take care of all my family’s needs?
• How do we segregate our goals for each member of our family, while still addressing the needs of our child with autism?
• How do we maintain a wealth management plan and protect our assets when we are facing so many unknowns relating to our child with autism?
• When do we need to start thinking about and planning for the potential guardianship role our other children may have relating to our child with autism? At what age do we start introducing the possibility that our other son or daughter may have a role in taking care of their brother/sister when we no longer can?
• Our time is so fully consumed with helping our child with autism on a day-to-day basis. How do I continually find the right resources at each stage of my child’s life?
• Are there other questions I should be asking?

Selecting the Right Wealth Management and ILP Team

Parents should seek out a wealth manager who has both the credentials and experience with spectrum children. In addition, this professional should have the right resources in place for a comprehensive, fully-integrated and holistic service. This requires the wealth manager’s team to also include:
• An estate planning attorney with a concentration in special needs families, and experience serving families with autistic members,
• A Certified Public Accountant to manage tax matters,
• An insurance specialists with experience serving affluent families and in special needs planning
• A banker with private banking experience.

While the family may have many of these trusted advisors in place, it is important that they be assessed for their expertise in serving families touched by autism. Even longstanding relationships should be reviewed in this context in order to serve the best and long-term interests of both the family and child with autism.

In addition to the financial team members, the wealth manager will also have a clinical team led by a case manager. This professional’s role is that of an advocate for the family and the autistic child; someone who will assist the family in securing the best resources (e.g., medical, therapeutic, housing, social services and government benefits) for the child over his/her lifetime.

It is the role of the entire professional team to work together to develop, manage and monitor the family’s sustainable wealth management plan and ILP. Integral to the wealth management plan are vehicles to accumulate and preserve wealth. Working together, the professional team will guide the design of a wealth distribution, accumulation and preservation plan. It will encompass a special needs trust, education plan, housing plan, retirement plan and key risk management instruments such as insurance and legal documents pertaining to the special needs of the family member with autism.

To obtain a free electronic copy of this white paper in its entirety, log on to
www.legacyofloveplan.com