The National Academy of Elder Law Attorneys is seeking to rally support for a measure in Congress that would offer people with disabilities greater self-determination, a stronger say in their own affairs.

Other organizations, notably the Special Needs Alliance, are also urging passage of the Special Needs Trust Act in the U.S. House of Representatives and the Senate.

“This is a law that is long overdue,” Jennifer Steneberg wrote in an article posted on the website of the Alliance.

“Special needs trusts allow persons with disabilities to supplement daily living expenses when government benefits alone are insufficient and protects them against the risk of impoverishment,” according to the NAELA  “But under the current law, only a parent, grandparent, legal guardian of the individual, or a court can establish a special needs trust.”

In strongly backing passage of the act, the Academy provides on its website a list of talking points for people to use in speaking with their elected representatives or staff members along with sample letters and emails.

“The Special Needs Trust Fairness Act would correct an inequity by making a simple change to the Social Security Act that would allow individuals to set up their own special needs trusts,” one of the talking points states. By leaving out “the individual,” the law in effect decrees that all persons with disabilities do not have the mental capacity to handle their own affairs.

“The provision also leads to unnecessary legal and court fees for those who wish to establish a special needs trust but for some reason do not have parents or grandparents to help them set up these trusts. In these instances, the individual is forced to petition the court to set up the trust.”

“Given the increasing focus on empowering individuals with special needs and a growing self-advocacy movement, retaining legislation that presumes that all individuals with disabilities lack the mental capacity to manage their affairs is both insulting and uninformed,” noted Steneberg. “Consider, for instance, the large number of injured veterans, who have physical injuries but are mentally capable, who could benefit from this minor change in the law.”

“There would be little cost to either the federal government or the states if this legislation were passed, because upon the beneficiary’s death, funds remaining in a first-party (special needs trust) must first be used to reimburse Medicaid for services provided. On the other hand, individuals who must rely upon a court to establish trusts on their behalf end up paying about twice what it would cost if they were able to establish them on their own. The Special Needs Alliance has joined numerous other advocacy organizations — the National Academy of Elder Law Attorneys, National Multiple Sclerosis Society, Easter Seals and others — in supporting this legislation, which the Senate Finance Committee approved during the last session of Congress.”

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