By Richard Barid and Michael Smith
For most parents, the job of raising a child ends when
the child turns 18.
When your child has special needs, however, your
caregiving role lasts a lifetime.
These parents face the dilemma of how to provide for their
children with special needs beyond their own lifetimes.
Autism Speaks recently estimated the lifetime cost of
care for a person with autism or an intellectual disability
between $1.4 million and $2.4 million.
Many children with special needs rely on Supplemental
Security Income (SSI) and Medicaid, government programs
with severe asset restrictions. SSI provides for the bare
necessities of food, shelter and clothing and Medicaid is
often the only health insurance that will cover a child with
However, these programs do not cover all of the costs
associated with caring for a child with special needs. A child
may need extra income to pay for out-of-pocket medical
and dental expenses, transportation costs or a personal
Because of the asset restrictions associated with SSI and
Medicaid, parents of children with special needs cannot
simply bequeath their assets or money to their children
when they die. However, the government has established
rules allowing assets to be held in a trust, called a “Special
Needs” or “Supplemental Needs” Trust for a recipient of
SSI and Medicaid, as long as certain requirements are met.
An attorney who focuses in special needs planning can
help you set up a Special Needs Trust to supplement your
loved one’s public benefits and enhance their quality of life
while preserving their government benefit eligibility.
Generally, Special Needs Trusts are either stand-alone
trusts funded with a separate asset such as a life insurance
policy or can be a sub-trust in your living trust. Parents
should be aware that funds from the trust cannot be
distributed directly to the beneficiary. Instead, funds
must be disbursed to third parties who provide goods and
services to the beneficiary.
The Special Needs Trust can be used for a variety of lifeenhancing
expenditures such as:
• Annual check-ups at an independent medical facility
• Attendance at religious services
• Supplemental education and tutoring
• Out-of-pocket medical and dental expenses (not
otherwise covered by available benefits)
• Transportation (including purchase of a vehicle)
• Maintenance of vehicles
• Purchase materials for a hobby or recreation activity
• Funds for trips or vacations
• Funds for entertainment such as movies, shows
• Purchase of goods and services that add pleasure and
quality to life: computers, videos, furniture, or electronics
• Athletic training or competitions
• Special dietary needs
• Personal care attendant or escort
Once you create a Special Needs Trust, you can rest assured
that should something happen to you, your children will still
receive the support they need to live comfortably.
To find a competent special needs attorney in your area,
visit the National Academy of Elder Law Attorneys’ (NAELA)
website at www.naela.org. NAELA attorneys are experienced
and trained in working with the legal problems of aging
Americans and individuals of all ages with special needs.
Richard Barid and Michael Smith are co-founders of Savannahbased
law firm Smith Barid LLC, which focuses on estate
planning, special needs planning and elder law planning.