The list of priorities for families of children with autism is long: Doctors' appointments, speech therapy sessions, social skills groups, and Individualized Education Program (IEP) meetings are just a few of the items on the agenda.
Families are often focused on the here and now – what's best for their child's development today. The future is filled with unknowns and these day-to-day struggles often overshadow long-term plans, which may be difficult to think about.
The considerations are many, including basic logistics, such as housing, living expenses, and income, in addition to therapies, social groups, and activities or programs that may improve an individual's overall quality of life.
"As parents, we fight for the best IEP for our child, which leads to the best quality of life. Financial planning serves the same purpose," said Clark Crawford, vice president of sales and new business at Volios Group in New Jersey, and father of a child with an autism spectrum disorder.
For Crawford, the essentials when it comes to planning include a will, which dictates proper guardianship of the surviving children; a special-needs trust, which may fund both the necessities and any extra services; and insurance plans to provide for the family in case of a crisis. A sound plan needs to take unexpected deaths into account, he added.
"We talk about financial and insurance planning for the long term. What about a 6-year-old with autism who is left without parents?"
A family’s current financial situation and dynamics are important factors to consider when planning, but a crucial factor is the independence level of the child with autism. Some children with autism spectrum disorders’ (ASD) academic skills that are at or above their grade level, but exhibit deficits in other areas, including social, emotional, and problem solving skills.
"With just an insurance plan, a check may be issued to a child who is not prepared to manage it," said Crawford.
Bruce Maier, Financial Consultant for AXA Advisors, said when he initially sits with a family, he presents the idea that they are planning for two generations.
"Every family and situation is different. Every child with autism is different. The personalization of the plan is so important,” Maier said. “We talk about 'What keeps you up at night?' Granted, everything will keep you up at night when you have a child with special needs, but that question helps us focus on the priorities."
According to Maier, families of children with special needs are used to working with a team of professionals and should consider a financial planner another member of the team. On the other hand, he understands why people put off meeting with a financial planner or an insurance agent, and in turn, discussing guardianship.
"Parents may not be ready to have that conversation," but, he added, by planning and putting some of the pieces in place, "You can approach the potential guardian and say 'I know this is a difficult thing to assume, but I've made some financial arrangements that may make the situation more comfortable.’"
Though financial planners and insurance agents know their products well, it's the parent of the child with ASD who truly knows the ins and outs of daily life. To that end, Maier suggests that in addition to any legal documents and plans families may put in place, parents write a letter of intent, documenting all the details of caring for their child with special needs, including medications, daily schedules, and favorite toys, movies, or activities.
"For example, if every time Johnny goes to the pediatrician, he gets a red lollipop -- and it has to be red -- that can really make or break a situation," said Maier.
Knowing that many children with autism follow specific schedules or have very unique preferences, a letter of intent, though not a legal document, may ensure vital information is passed on to those now caring for the child.
Douglas O. Baker of Los Angeles, California, is a Special Needs Advisor and, like Crawford, is a father of a child with ASD. Baker said parents should to work with someone they trust, as he has come across his share of professionals who don't necessarily have the child's best interest in mind, or don't listen to the family’s needs.
"Parents have to be wary of agents poaching special needs families, simply trying to sell a product,” said Baker. “Families drop their policy after a year because it didn't make any sense."
Baker said he focuses on helping families create a positive quality of life both parents and their children can enjoy now, as well as planning for the future. In addition to financial planning, he assists families in navigating school and service systems, and likens himself to an air traffic controller or a quarterback, acting as a resource because he knows how overwhelming the decision-making process can be for a family.
"There are a lot of moving parts when it comes to having a child with autism,” said Baker. “You think birth to 21 years old is the hardest part; the longest stretch in your life with a special needs child is adulthood."
All three professionals highlight the importance of creating a plan that attends to the needs of the caregiver, whether it be the parents who are still living, or a guardian who steps in upon their passing.
"Parents are so used to focusing on the child with special needs, but if you do not think about yourself and your goals in the sense of risk protection among your assets, disability insurance, and your ability to maintain income, it becomes a catastrophic situation for a family of children without special needs,” said Maier. “It becomes an almost impossible situation for a family of a child with special needs."
With all of the components of raising and caring for a child with ASD, the financial aspect is one of the most daunting and overwhelming for families already inundated with decisions to be made. By meeting with a professional and evaluating the family's current and future state of affairs, parents of children special needs children may be able to take one thing off their very full plates.
Jennifer is an educational consultant who works with families and educators to establish healthy and productive routines in the home and school. Adapting behavior management techniques she implemented for years as a special educator, she helps parents and teachers adopt these tools to fit their unique needs and priorities. Jennifer also speaks to parent and education groups on current topics in education and children's health. Visit www.jennifercerbasi.com