7 additional resources
Look to these online sources to point you to people in your area who can give personalized support.
• The Academy of Special Needs Planners, a network of financial planners and lawyers, provides resources on special needs planning and a directory of professionals.
• American Bar Association Home Front offers a directory of programs to help parents of disabled veterans find local legal aid programs and lawyer referral services. These programs potentially can connect families with lawyers — either pro bono or for hire — who can assist with plans relating to guardianship, estate matters and trusts, including special needs trusts for adult children with disabilities.
• The Arc Center for Future Planning offers online planning tools for people with developmental or intellectual disabilities. The Arc, the disability rights group that operates the center, has more than 600 state and local chapters that can help you find additional resources and services.
• Aging and Disability Resource Centers, a part of the federal Administration for Community Living, help people with disabilities and their families learn about and access long-term services and support systems.
• Disability advocacy groups such as the Autism Society of America and National Down Syndrome Society have local chapters that can lead you to specific resources and supports related to your child's condition.
• Easterseals offers help with job training and coaching, employment placement and transportation for disabled adults. It also can help veterans and those with disabilities obtain affordable housing through renting or buying a home.
• The National Academy of Elder Law Attorneys maintains a directory of lawyers with expertise in crafting special needs trusts and other services.
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.