man on wheelchair

The fight is not over to have the Special Needs Trust Fairness Act become law. The Act has won a victory in the Senate and has support in the House, but to make it out of a House subcommittee, supporters need to contact their representatives in Washington and tell them how important this act is.

As many of you know, Michael J. Amoruso, Esq. has been the leading advocate of the Special Needs Trust Fairness Act well before he brought the issue to the National Academy of Elder Law Attorneys (“NAELA”) to actively draft, support and push for its introduction and passage in Congress as Past Chair of NAELA’s Public Policy Committee. The Act has passed the Senate and is viewed by the House Energy & Commerce Committee as common sense legislation. But we need your help! Here is a bit about the importance of this legislation directly from Michael J. Amoruso, speaking as a disabled individual as well as an attorney:

“Have you ever witnessed the pain of dignity being stripped from a person simply due to a physical disability that prevents the person from entering a store because their wheelchair cannot go up a step that leads into the building? With the passage of the Americans With Disabilities Act of 1990 (“ADA”), Congress made a big leap forward in providing a means for individuals with disabilities to gain access and accommodations to give them the dignity and equality they deserve as citizens. Yet, even to this day, those of us with disabilities must continue to erase the historic, age-old stereotype that a person with a disability is a lesser individual than their able-bodied neighbor. Not a day goes by that my routine is not disrupted because I must advocate for my right to allow my Seeing Eye Dog to guide me through the corridors of public buildings….and I am a lawyer.

Unfortunately, merely one year after the ADA went into effect, Congress appears to have made a legislative drafting error that had the profound effect of codifying an unimaginable presumption in our country – the presumption that a person with disabilities lacks the equality or mental capacity to enter into a contract. Try telling that to President Franklin D. Roosevelt, Helen Keller, Ray Charles or our wounded veterans! Specifically, in 1993, Congress added a wonderful concept called a “Supplemental Needs Trust” to the Omnibus Budget Reconciliation Act of 1993 (“OBRA 1993”). This concept permits a disabled individual under the age of sixty-five, who may rely on Medicaid for health benefits and/or Supplemental Security Income to survive, to have a Supplement Needs Trust (“SNT”) established to hold his or her savings in order to have supplemental funds to pay for daily living items that such benefits would not cover. This hedges the risk of complete impoverishment and the inability to meet living needs. The quid pro quo for such protection is that, at the disabled individual’s death, the State would be reimbursed from the trust assets for Medicaid benefits paid to the individual during lifetime. Following in the footsteps of the ADA, this concept has helped advance the quality of life and opportunities for those with disabilities.

However, this provision, USC §1396p(d)(4)(A) further provides that, to have the benefit of the SNT, the trust must be established by a parent, grandparent, legal guardian of the individual or a court. Let’s revisit that point: the SNT must be established by the parent, grandparent, legal guardian of the individual or a court. Now, can the reader identify who are missing from this list of eligible individuals?  That’s correct….the individuals themselves. Evidence of this unfortunate oversight can be seen in the very next sentence of the statute which offers protections to a similar SNT known as a “pooled trust”. In particular, that provision authorizes the pooled trust to be established by the parent, grandparent, or legal guardian of such individuals, by such individuals, or by a court. Aside from the mistaken presumption that disabled individuals lack capacity to establish their own SNT, this omission results in inequitable and unnecessary legal costs and time for the disabled individual. Imagine the impact on a person who does not have the luxury of a living parent or grandparent and does not lack mental capacity that requires the appointment of a legal guardian. That person’s sole option is to hire a lawyer to petition the court to exercise a fundamental right that the person is born with in our country. Depending on one’s geographic location, this cost could range from $2,500 to over $6,000.

This dilemma was recently experienced by a sixty-two year old client of mine who was the victim of medical malpractice which rendered her paralyzed and confined to a nursing home that charges over $100,000 per year for her care. She not only has the mental capacity to direct her care in the facility, but she also was the star witness in her lawsuit, testifying in court as to her ordeal. When it came time to set up her SNT, I had to inform her that she could not simply sign the SNT, but instead, since she did not have a parent, grandparent or legal guardian, she had to petition the court to authorize it. My words cannot convey the shock on her face. My words could also not convey the shock on the faces of the legislative assistants in Congress while I was walking the halls of Congress and informing them that I, a blind and moderately deaf attorney who has drafted thousands of SNTs for clients, would not even be able to sign my own SNT in the future.”

Now for the good news! NAELA has been working with Congress and other advocacy groups to change this injustice. NAELA has joined forces with members of the Leadership Council of Aging Organizations and the Consortium for Citizens with Disabilities in lobbying efforts. NAELA members are also taking individual action by calling on their Congressional Representatives and Senators to make this justified and cost neutral change to USC §1396p(d)(4)(A) to insert the phrase the individual so that those of us who have disabilities can regain the dignity we deserve and remove the misplaced presumption that we lack capacity due to our disabilities.

This is your Call To Action! Please contact your representatives to tell them to give disabled individuals back their constitutional right! Please visit NAELA’s information page located at for all of the materials you need to help us get the SNT Fairness Act passed!

Reference: Special Needs Answers (September 24, 2015) “Senate Passes Special Needs Trust Fairness Act; Focus Shifts to House.”

For more information on supplemental needs trusts and estate planning, please visit my estate planning website.

Mr. Amoruso concentrates his practice on Elder Law, Comprehensive Estate Planning, Asset Preservation, Estate Administration and Guardianship.