Congress' Drafting Error Denies Individuals With Disabilities A Fundamental Right · Parkinson's Resource Organization

Congress' Drafting Error Denies Individuals With Disabilities A Fundamental Right


Have you ever witnessed the distress of dignity being stripped from a person simply due to a physical disability that prevents the person from entering a store because her or his wheelchair cannot go up a step that leads into the building?

All Citizens Deserve Dignity and Equality – 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 her or his 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. Can you imagine how difficult and demoralizing that would be for someone who doesn’t have the legal training and/or assertiveness that I possess?

You are probably wondering why I am sharing with you these daily challenges. Well, I have identified one inequity that can be fixed. Merely one year after the ADA went into effect, Congress made what appears to be a legislative drafting error that has 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. We would not make that presumption about President Franklin D. Roosevelt, Helen Keller, Ray Charles or our wounded veterans!

What Are Supplemental Needs Trusts? – 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 an individual with disabilities under age 65, who relies on Medicaid for health benefits and/or Supplemental Security Income (SSI) to survive, to have a Supplemental Needs Trust (SNT) established to hold his or her savings.

The benefit of the SNT is that it allows this individual to have supplemental funds to pay for daily living items that such benefits do not cover, such as:

  • shampoo and other toiletries,
  • haircuts,
  • magazine subscriptions,
  • tickets to the movie theater,
  • clothing,
  • hobbies,
  • furniture for the home,
  • and computers.

These items can make the difference between simply existing and enjoying life. The SNT can also pay for health care not covered by Medicaid, such as experimental or alternative medical treatments. The funds put in the SNT are often provided by a loved one or from a legal settlement.

In order to qualify for Medicaid or SSI, a person must meet financial thresholds. The SNT hedges against the risk of complete impoverishment and the inability to meet what most of us consider to be basic living needs. In exchange for that protection, upon the disabled individual’s death, the state is reimbursed from the trust assets for Medicaid benefits paid to the individual during his or her lifetime. Following in the footsteps of the ADA, this concept has helped advance the quality of life and opportunities for those with disabilities.

There are various kinds of SNTs that disabled individuals can chose from, depending on a variety of factors, such as the disabled individual’s age and the amount of assets that will be placed into the trust. A (d)(4)(C) pooled trust is administered by a nonprofit organization, where each disabled individual has a separate subaccount within the trust and the trust assets are pooled together for investment and management purposes. Unlike (d)(4)(C) pooled trusts, (d)(4)(A) trusts are not administered by a nonprofit organization but rather the trust is managed by a trustee, sometimes a family member, for the sole benefit of the disabled individual.

In addition to the provisions established by OBRA 1993, 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 is missing from this list of eligible individuals? That’s correct …the individual. Evidence of this unfortunate oversight can be seen in the very next sentence of the statute that 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.

Denying a Basic Right Aside from the mistaken presumption that such individuals lack capacity to establish their own SNT, this omission results in inequitable and unnecessary legal costs and time for the individual with disabilities. 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 $1,500 to more than $6,000.

This dilemma was recently experienced by a 62-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 also cannot convey the shock on the faces of the legislative assistants in Congress when I informed 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.

Congress Must Act – NAELA is working to change this injustice. NAELA will join forces with the Leadership Council of Aging Organizations and the Consortium for Citizens with Disabilities in lobbying efforts, as well as individual members of these coalitions. 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 by such individuals 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.

Visit the NAELA Attorneys in the WELLNESS VILLAGE.

©National Academy of Elder Law Attorneys NAELA: Congress’ Drafting Error Denies Individuals with Disabilities a Fundamental Right is presented as a public service by the National Academy of Elder Law Attorneys (NAELA). With a focus on topics concerning our nation’s older adults, people with disabilities, and their families, NAELA challenges stereotypes, explores issues from all sides, reports on relevant topics, and provides timely insight.

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Updated: August 16, 2017