Richard A. Courtney, President of the Special Needs Alliance (SNA) and principal in the Courtney Elder Law Associates section of Frascogna Courtney, PLLC, testified Friday, September 18 before the U.S. House Energy and Commerce Committee Subcommittee on Health in favor of the Special Needs Trust Fairness Act (H.R. 670).  The bill would enable mentally capable adults with disabilities to establish “special needs trusts” (SNT) on their own behalf.  SNTs are a means of protecting eligibility for assets-based programs such as Medicaid and SSI (Supplemental Security Income), while holding funds for expenses that those programs fail to cover.  The same measure was approved unanimously by the U.S. Senate on September 9.

Courtney told the Subcommittee members that the legislation that originally created special needs trusts (SNTs), the Omnibus Budget Reconciliation Act of 1993, “included a drafting oversight that seems to assume that a person with disabilities lacks the requisite mental capacity to enter into a contract….  We believe it was … not the intent of Congress to deny a basic right to individuals with disabilities.”  At present, special needs trusts funded with assets of an individual with disabilities must be created for that individual by his or her parent, grandparent, legal guardian or a court.  This forces adults with no living parent or grandparent and no guardian to petition a court to create such a trust.
Courtney’s  remarks were grounded in both his professional background as a special needs and elder law attorney and his personal experience as the father of a daughter with cerebral palsy and learning disabilities.  Speaking of daughter Melanie’s determination to live as independently as possible, he noted, “She has never wanted help with things she could capably do.  She does, however, need and is receiving attendant care under a Medicaid waiver program.  The cost of paying for her care and supportive services is high, and she must rely, as do many persons with disabilities, on programs like Medicaid.”
Current law would prevent her from creating her own trust if she were to receive an inheritance or settlement, and she could lose the Medicaid waiver benefits that pay her attendant to assist her for a few hours daily with certain activities of daily living.  Having an SNT would allow Melanie to pay for additional health care not covered by Medicaid, as well as basic needs such as clothing, transportation, furniture or a computer.  “These are things that many of us take for granted, yet many individuals with disabilities don’t have the necessary resources to make such purchases without funds from a special needs trust,” Courtney continued.
“Beyond the degrading presumption of mental incompetence, the effect of the law means that persons with disabilities who have no close family must petition the court and undergo unnecessary legal fees, court delays, and even potential guardianship.  In some cases, if the individual does not have the funds to hire a lawyer, then she or he loses access to necessary government benefits. “
The Special Needs Alliance is a national, not-for-profit organization of special needs planning attorneys committed to helping individuals with disabilities, their families and the professionals who serve them. Membership is based on a combination of relevant legal experience in the disability and elder law fields, direct family experience with disability, active participation with national, state and local disability advocacy organizations, and professional reputation.
Courtney Elder Law Associates is a practice section of the Jackson, MS-based Frascogna Courtney, PLLC law firm.  This section provides legal services in the areas of estate planning, elder law, incapacity planning, nursing home and long-term care planning, Medicaid and public benefits advocacy, and special needs planning for children and adults with disabilities, among others.
For more information on the Special Needs Trust Fairness Act, and to view the hearing, visit:  http://energycommerce.house.gov/hearing/improving-medicaid-program-beneficiaries