SDM Policy Making Successes

Legislatively, two states, Texas and Delaware have passed Supported Decision-Making statutes that require third parties to honor SDMAs and relieve them from liability for doing so. Four additional state legislatures are actively considering similar legislation.

District of Columbia Public Schools has adopted a policy requiring its schools to accept SDMAs in connection with all services offered to students with intellectual and developmental disabilities.

The Uniform Law Commissioners have approved a revision of the Uniform Guardianship and Protective Proceedings Act (UGPPA) that specifically mentions supported decision-making as a less restrictive alternative that must be considered before guardianship can be imposed, and that should be considered as grounds for terminating a provide for termination in existence. Note that the UGPPA, while adopted by many states, is not the law in New York.

The American Bar Association has passed a resolution urging legislatures to amend their guardianship laws to provide that supported decision-making should be considered as a less restrictive alternative before guardianship may be imposed, and that it should provide grounds for the restoration of rights of persons currently subject to guardianship.

An Agenda for Change in NYS

Making supported decision-making a viable alternative to guardianship in New York requires a number of steps.

First, stakeholders (persons with I/DD, parents and family members, providers, the educational system, judges, lawyers, and the court system, healthcare providers and financial institutions) need to be educated about supported decision-making, how it differs from guardianship, how it enhances self-determination and inclusion, and, perhaps most critically, that it actually works in practice. This latter can best be achieved by our pilot project results, by the stories of people with I/DD successfully making their own decisions with supports, and through their voices and those of their family members and supporters.

Second, governmental agencies with which persons with I/DD and their families interact (like OPWDD, Department of Health) need to agree to accept SDMA’s, to deal with designated supporters.

Third, courts and attorneys should recognize supported decision-making as a constitutionally required “less restrictive alternative” to guardianship, as well as a basis for restoring rights to persons currently subject to guardianship.

Fourth, educational institutions, especially special education, should explicitly incorporate supported decision-making in transition planning, and should include teaching decision-making skills throughout the curriculum from pre-K to graduation from high school.

Fifth, legislation, like that already passed in Texas, is needed so that private third parties like healthcare providers, financial institutions, landlords, etc. can accept SDMA’s without fear of potential liability, and are required to do so as a matter of law.

Sixth, to ensure sustainability, Medicaid funding (whether through existing waiver categories or otherwise) should be available to provide facilitation for persons with I/DD who choose to enter into’s SDMAs.