Autism economics

The daily demands of caring for a child with autism can be so overwhelming that future planning — particularly financial planning — can seem impossible. Yet the financial impact of autism is substantial and being on the autistic spectrum has current and future financial implications on the child, as well as on developing siblings and the parents of the special needs family.

A lack of preparation weighs heavily on many parents. According to “Living with Autism,” a 2008 study by Easter Seals and the Massachusetts Mutual Life Insurance Company of parents who have children with autism:

• 74 percent fear their children will not have enough financial support after the parents die (compared to only 18 percent of parents with typically developing children).

• 52 percent say caring for their child drains the family’s current financial resources (compared to 13 percent).

• 47 percent say the cost of care financially impacts how the parents raise typically developing siblings.

Despite the overwhelming need for support, most parents don’t seek the help of skilled financial professionals. Moreover, even when they do reach out, the help parents receive can be misguided because it often comes from financial professionals who are not trained to deal specifically with complex cases involving children with special needs. With the right guidance, however, a family can take steps that provide peace of mind and a solid financial foundation with long-lasting benefits.

• Create a letter of intent that catalogues important information about the family member with special needs. With this information documented, all crucial details are in one place and accessible to future caregivers in an emergency. Although not legally binding, a letter of intent offers guidance to the courts and trustees for interpreting care instructions. It generally includes a person’s medical history, emergency contacts, preferred living arrangements, education or work arrangements, recreational preferences, behavioral challenges and a summary of family and financial information. The letter is a good document for parents and caregivers to share with planners and other professionals. (MassMutual offers a free template of a letter of intent.)

• Implement a Supplement Special Needs Trust (SSNT), which helps provide financial resources to an individual with special needs without jeopardizing eligibility for federal aid. (Even $1.00 more than $2,000 in assets can disqualify an individual from governmental programs.) But assets in an SSNT do not count against this $2,000 limit, making it an effective vehicle for enhancing the lifestyle of the person with special needs. You need not be wealthy to have a trust, and there are many ways to fund trust accounts.

• Write wills for your family! It’s important for both parents to have wills and for the wills to coordinate with other planning documents, such as the child’s trust. For example the SSNT can accept the special needs child’s share of the estate, thereby preserving the child’s eligibility for governmental programs.

• Choose guardians, caregivers and trustees. It’s vital to select the right people for these jobs and advise them of your selection. A great caregiver (guardian) might be a terrible money manager (trustee) and vice versa. The co-trustee or “committee” approach is often used in difficult situations in which the burden of care and/or oversight is too much for one person alone.

• Know your resources. Your child may be eligible for benefits under Medicaid, Medicare, the State Children’s Health Insurance Program (SCHIP) or the Children with Special Health Care Needs (C8HCN) provision of the social Security Act. Parents and caregivers can visit the Web sites for these entities to check eligibility requirements. Easter Seals and other nonprofit organizations provide services, education, outreach and advocacy so that people living with autism and other disabilities can live, learn, work and play in their communities. It is wise to work with a special care planner who is aware of available resources and how to coordinate them.

• Corporations can be helpful, as well. MassMutual offers free resource guides, available at www.massmutual.com/specialcare, including Making Plans, a financial outline for people with Down syndrome and their families; a Resource Guide for people with disabilities and other special needs; With Open Arms, a financial plan for families with disabilities; a letter of intent template that aids parents in drafting this important document that supplements life-care plans; and a Gift Guide for giving gifts to children with special needs while avoiding the risk of losing government funding.

Jeffrey R. Silverman, JD, is the director of Special Needs Planning for the Center for Wealth Preservation, Syosset, New York. He can be reached for consultation by telephone at (516) 682-3363 or e-mail at [email protected].