SNA at The Arc Convention

SNA member Brian Rubin (at podium), in his capacity as president of The Arc of Illinois, comments on the choice of Illinois Governor Patrick Quinn to receive the Advocacy Matters! Award. With him are Nancy Webster, president of The Arc of U.S., and Tony Paulauski, executive director of The Arc of Illinois.

During The Arc’s recent convention in Seattle, SNA members Brian Rubin, Buffalo Grove, Illinois, and Steve Dale, Pacheco, California, discussed trends in special needs trusts (SNTs), as well as guardianship and its alternatives.

“The challenge is to design an SNT that can ensure financial security in the face of inevitable change,” said Steve. “Public benefits and social service systems are evolving, and your family member’s needs may shift over time, too.”

In addition to creating a trust that’s flexible enough to accommodate the unforeseen, the trustee(s) must be chosen with care. They should understand government programs and tax law, be prepared to keep detailed financial accounts and be wise investors, since they are legally liable for proper trust administration.

One way to guide trustee performance is to name a trust advisory committee, which is authorized to direct distributions, amend the SNT and, if necessary, replace the trustee. Including a care manager on the committee—a health and human services specialist—can be an effective means of determining how trust funds can best contribute to the beneficiary’s quality of life. Steve commented that, in his experience, developing a distribution plan, then reviewing it annually, is the best use of the committee’s resources.

Appointing a trust protector is another way to oversee trustee behavior. A trust protector monitors the SNT’s overall performance, in addition to having the ability to amend it and remove the trustee.

Guardianship and Alternatives

In his presentation on guardianship, Brian addressed the dilemma faced by many families when a loved one has developmental disabilities—determining the right balance between personal independence and protection. “All individuals value their right to make their own choices, even when others don’t necessarily agree with them,” he observed. “Because guardianship is such an infringement on another’s privacy, alternatives should always be considered.”

The purpose of guardianship, he noted, is to help an individual with limited capacity “achieve the highest level of functioning possible.” So if the individual is able to make certain decisions on his/her own behalf, less intrusive options may be adequate, including:

  • naming a “representative payee” for SSI and SSDI benefits;
  • establishing a joint bank account;
  • obtaining signature authority;
  • granting powers of attorney covering finances, healthcare or education.

If guardianship is the right choice, it becomes important to name a successor to assume that responsibility when the original guardian is no longer able to do so. A detailed letter of intent (LOI) should also be created to ease the transition. The LOI is a roadmap containing information regarding medical treatment, education, benefits, social life, personal likes and dislikes—anything that will help the new guardian ensure quality of life for your family member. A two-page, bulleted summary should be included for quick reference. What are your tried and true “meltdown techniques”? Who should be called in an emergency? No one will ever know your child as you do, but the LOI can go a long way toward preparing someone for this critical role.

Threats to Public Programs

“I was very impressed by some of the public policy discussions led by the Arc policy team, including Annie Acosta and Marty Ford, ” comments Steve. “Serious challenges are being launched against Supplemental Security Income (SSI) and Medicaid, and there’s the potential that adverse changes will be made to those programs. It will be important for families to stay informed in order to educate their legislators on the significance of those benefits to people with disabilities.” To access the materials from the Arc Policy Presentation, go to .