How to plan for your disabled child's future

Adults with disabilities are living much longer than in the past, which means their aging parents must plan for the likelihood that their dependent children will outlive them. The life

expectancy for people with Down syndrome has increased from 25 years in 1983 to 60 today, according to an October 2020 report in the _Journal of the American Medical Association_. Studies

show it is not uncommon for people with cerebral palsy, the most common motor disability among U.S. children, to live into their 50s. Increasing numbers of children are also being diagnosed

with autism spectrum disorder, which by itself does not affect life expectancy but can require lifelong care. And hundreds of thousands of service members, many without spouses, returned

home from the conflicts in Afghanistan and Iraq with traumatic brain injuries and other disabilities. Whether your child will live independently, require round-the-clock care or have needs

somewhere in between, this guide can help you put financial resources and support services in place to ensure quality of life when you can no longer be the primary caregiver. PROTECT

FINANCIAL ASSISTANCE, ASSETS It is essential to preserve your child's access to government assistance programs such as  Supplemental Security Income (SSI), which guarantees a minimum

income and is available to children with disabilities, and Medicaid, which covers a broad range of health care costs. Eligibility for these benefits is based on limited income and, in some

cases, assets such as savings and investments. For example, individuals cannot get SSI if they have more than $2,000 in financial resources (although not all assets count towards the cap).

The best way to preserve eligibility is to set up a special needs trust, says Michael Gilfix, a Palo Alto, California, lawyer who has been setting up these trusts for clients since the

1980s. Here are some important things to know about these financial vehicles. • NO SIZE LIMIT. Any amount of money can be put into a special needs trust, and the funds in the trust

don't count when determining eligibility for government benefits. By contrast, leaving money directly to your child will, in most cases, eliminate their eligibility for SSI and

Medicaid. • START EARLY. Set up a third-party special needs trust before your child turns 18, if possible. You are not required to put any money into it, but it will be there to protect

assets should your child become eligible and require government benefits. • FOLLOW THE RULES. If your child receives SSI benefits, money from the trust can't be used for food and

housing. However, it can be used for other expenses, such as therapies not covered by Medicaid, or extras like vacations and cellphones. If your child works, money from the trust can

supplement existing income. • CHOOSE A TRUSTEE. One of the most important decisions you must make is designating someone to manage the trust on behalf of your child. The trustee should be

someone responsible who cares about your child; this could be a sibling or other family member you expect to live longer than you.