by: Thomas D. Begley, Jr.

Some 43 million Americans have one or more physical or mental disabilities.[1] This number is increasing as disabilities such as Autism and Alzheimer’s disease become more prevalent. Disabilities do not discriminate on the basis of age, race, or national origin. Some individuals with disabilities are wealthy, some are poor, many are middle class. An elder and disability law attorney with knowledge of disabilities can be of great value to these individuals and families.


Special needs planning involves much more than trusts. Trusts are simply documents. The real value that an elder and disability law attorney and other members of the disability team bring to the table is the ability to assist in lifetime financial and personal care planning for the person with disabilities. The lawyer must understand the clients, their disabilities, their limitations, their strengths, their hopes, and their dreams. Planning involves an understanding of public benefits laws, tax laws, and the laws pertaining to special needs trusts.

In planning for special needs the following concerns must be addressed:

  • An Individualized Education Plan (IEP) must be developed. The IEP must take into consideration the transition from high school at age 18 to post-school activities ensuring that all transition services are accessed.
  • Letter of Intent
  • Cost of services
  • Apply for SSI at age 18
  • Decide who will be guardian and obtain appointment of guardian at age 18, if the disability is mental illness or a cognitive disability that creates incapacity
  • Decide how funds will be managed
  • Prepare a Special Needs Trust
  • Explore all health care options



What is a disability? The Social Security definition of disability is set forth in the Social Security Act, which reads:

“Disability means the inability to do any substantial gainful activity by reason of any medically-determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than twelve months. The impairment must be so severe that the individual is unable to do his or her previous work or any other ‘substantial gainful activity’ which exists in the national economy. The person’s ‘residual functional capacity’ and age, education and work experience will be considered in determining whether the person is able to do other work.”[2]

Substantial gainful activity (SGA) for a person with a disability is the ability to earn $1,040 per month in the workplace effective January 2013. For a blind person, SGA is $1,740. This is indexed for inflation.[3] SGA is now determined by the ratio of the national average wage index for the previous two years, comparing that amount to the current SGA level and taking the greater of the two. Section 7501 of the Deficit Reduction Act (DRA)[4] requires the Social Security Administration (SSA), before payments begin, to review eligibility decisions for people age 18 or older made by the state disability determination agencies in order to ensure that the individuals are, in fact, eligible for SSI benefits. Known as “pre-effectuation reviews,” these reviews are already conducted for people in the Old Age, Survivors, and Disability Insurance Program (OASDI) and for SSI beneficiaries who also receive OASDI benefits.[5]

The Hartford Study

The Hartford issued a study revealing some interesting facts about the lack of preparation on the part of parents of children with disabilities.[6] The study showed that parents of America’s 2.6 million children with special needs have not planned for the future of their children after the parents are gone. Highlights of the study included the following:

  • 62% of parents of children with special needs have no plan to cover the cost of caring for the child when they are no longer able to do so.
  • Parents who do have a plan often make mistakes that will disqualify their child from government benefits on which they now depend.
  • 23% of parents spend at least $500 per month to address their children’s special needs.
  • 60% of parents believe these costs will continue into adulthood, but less than half have a plan to cover the costs.
  • Of the parents with a plan, only 42% are confident that it will cover their child’s lifetime needs.
  • 65% plan to cover the anticipated cost of care with life insurance.
  • 85% with a child under age 5 have life insurance.
  • Only 46% with a child between the ages of 13 and 18 have life insurance.
  • Half of all parents of children with special needs plan to leave money directly to the child.
  • 58% name their child as beneficiary of life insurance, annuities, or retirement accounts.
  • Only 25% of parents have established a special needs trust.
  • Only 16% of parents with a plan created it with the help of a financial advisor or attorney.


[1] 42 U.S.C. §12101(a).

[2] 42 U.S.C. §1382c(a)(3)(A); 20 C.F.R. §416.905.

[3] 77 Fed. Reg. 65,754 (October 30, 2012) Formula published in 65 Fed. Reg. 82,905 (Dec. 29, 2000).

[4] 42 U.S.C. §1383b; Section 7501 of Pub. L. No. 109-171 (2005).

[5] Disability Policy Memorandum, The ARC and United Cerebral Palsy, Deficit Reduction Act of 2005, Pub. L. No. 109-171 (Mar. 23, 2006).

[6] Most Parents of Children With Special Needs Lack a Plan to Cover a Lifetime of Care, The Hartford, April 2009.