What does AZ’s new SDM law mean for families?
When their daughter was close to turning 18, Richard Ambrose and his wife wanted to protect her. As a child, their daughter received diagnoses of anxiety disorder, ADHD and later autism. As she approached adulthood, they felt that she hadn’t yet developed skills to drive and make her own decisions, but hoped she would gain these and other skills with guidance.
After consulting different sources, the family obtained durable power of attorney for their daughter with assistance from a lawyer. Durable power of attorney grants authority for someone to act on behalf of another individual if they become incapacitated.
At the time, Ambrose asked their attorney if he should carry a laminated copy of the durable power of attorney at all times. He was advised that wasn’t necessary. He did bring a copy of the document when his family traveled by plane in case he needed to speak on his daughter’s behalf during the TSA screening process. While his daughter is verbal and capable of many things, she might shut down in stressful situations. Fortunately, she did fine during this experience, but Ambrose was grateful to have legal documentation if needed.
He also discussed the documents with the team at his daughter’s technical school. She graduated high school and attends beauty school, planning to pursue additional training in laser technology. Ambrose and his wife were concerned because they didn’t always see notifications from the school. He told school staff that they possessed durable power of attorney and signed a FERPA form. They now have access to their daughter’s educational records and information.
While the family isn’t officially doing Supported Decision-Making, they found an option that supports their daughter and preserves her decision-making ability. They might later consider Supported Decision-Making if it’s appropriate for them.
ABOUT SUPPORTED DECISION MAKING
A Supported Decision-Making (SDM) law passed in Arizona in 2023. This provides an option for disabled adults to create agreements with supporters, or the individuals who will help them with making important decisions. Supporters agree to assist individuals to understand, consider and communicate decisions. While the concept has been around for a long time, this new legislation formally recognizes SDM as an alternative to guardianship in Arizona.
The new law also provides protection for an individual with a disability, along with protections for supporters listed in the agreement. Supporters also become mandated reporters; they are required to report any suspected abuse of the individual. Supporters who intimidate or deceive a person with a disability or who abuse the authority from the SDM agreement can be subject to legal action.
Other legal arrangements like durable, financial or medical powers of attorney, Family Educational Rights and Privacy Act (FERPA) forms for schools or becoming a representative payee for an SSI beneficiary can be used in connection with SDM agreements. When used along with SDM, these documents are called complements, said George Garcia, executive director of the Southwest Institute for Families and Children.
It’s not required to have Power of Attorney along with SDM for a supporter to accompany the individual to an appointment, Garcia added. These documents serve different purposes. But an SDM agreement identifies specific areas where the individual would like assistance from others, providing additional confirmation to healthcare professionals that they’d like someone with them at appointments.
SDM DOESN’T REPLACE GUARDIANSHIP
Though SDM provides an option to guide young people into adulthood, guardianship may still be appropriate at times.
Parents petition for guardianship when they are concerned that their soon-to-be young adult could be taken advantage of or is likely to make unwise decisions. Guardianship is a legal process that appoints a person or organization to provide care and make decisions for an adult who has been determined as legally incapacitated. The ward, as the individual is called, has their rights removed and all decision-making authority rests with their guardian. Laws vary by state, but in Arizona, guardianship covers the individual’s decision making and conservatorship covers financial matters.
With full guardianship, the ward loses rights to drive, vote, get married, make financial decisions or enter contracts. With limited guardianship, an individual can maintain some of these rights as determined by their parent or caregiver, doctor and the courts. Ideally, guardians involve the ward in as much decision making as possible and strive to create the least restrictive environment possible in the best interest of the ward.
Parents who believe their child will need guardianship can start the process when their child is 17.5 years old. This way, the process is usually finalized by the individual’s 18th birthday. But a parent or caregiver can petition for guardianship for their adult child at any time.
The intent of the new Supported Decision-Making law is not to replace guardianship, said Melanie Soto, state director of The Arc of Arizona. When appropriate, families can start with SDM to see w an individual does with support. Given the right support, could the individual develop the ability to make appropriate decisions?
“If the individual is making choices that put themselves or others at serious risk, and all other least restrictive options have been exhausted, it may then be appropriate to explore guardianship,” she added.
HOW TO START
To create an SDM agreement, a young adult and their parent or other supporter can use a template. The final agreement requires a notary or signatures from two independent witnesses to be valid. To receive protection outlined under the new law, individuals must use the specific SDM template, like the one available on The Arc of Arizona website.
The SDM template includes topics like housing, medical and educational resources. Individuals can have multiple supporters in different areas. Supporters can’t make decisions for the individual, but they are tasked with helping the individual to understand different options. An expiration date is not required; however, individuals who want to start with SDM can put an expiration date on the agreement to set a time to reconsider how it’s working.
The SDM agreement does not need to be filed at a courthouse. Individuals can provide copies to their doctors, schools and other entities where they indicated that they want assistance from their supporters. If these agencies aren’t familiar with SDM, individuals can also print out and provide copies of the new law related to SDM, available here: https://www.azleg.gov/ars/14/05722.htm.
The Arc of Arizona, Disability Rights Arizona and other organizations are providing education to doctors, DDD support coordinators and other entities about SDM and how it can work with young adults and their supporters.
As of mid-March, 16 other states and the District of Columbia have SDM legislation and other states are considering legislation. If an individual moves to or from Arizona, they will need to update their SDM agreement based on state laws. A young adult can also end an SDM agreement at any time.
Training is available for those who have questions about the process. The Arc of Arizona and Disability Rights Arizona host in-person and virtual SDM training sessions. The schedule and registration is available here: https://arcarizona.org/idd-and-18-now-what-future-planning-resources/. The Southwest Institute for Families and Children also offers training videos: https://swifamilies.org/sdmvideos/.
CONCERNS ABOUT SDM
Parents might question whether an SDM agreement will provide enough protection for a young adult. SDM agreements don’t offer full protection to undo poor decisions. But they do put a team into place for an individual to consult when faced with decisions.
Parents might also question if doing SDM instead of guardianship could disqualify the individual from programs such as adult redetermination with the Division of Developmental Disabilities (DDD) and the Arizona Long-Term Care System (ALTCS) or Supplemental Security Income (SSI) from Social Security. DDD and ALTCS provide services to individuals with qualifying diagnoses and functional limitations, and SSI provides monthly payments to individuals with qualifying disabilities and financial needs. When an individual is 18 or older, SSI financial eligibility is based only on their income and assets.
Professionals who are active in SDM education remind families that guardianship is not a determining factor for a young adult to qualify for these services.
“To be eligible for DDD services, the applicant needs a qualifying diagnosis and functional limitations in three or more major activities of daily living, among other qualifications,” said Sey In, staff attorney with Disability Rights Arizona. “I understand the anxiety that parents are facing, but guardianship paperwork may be used to show that the individual is substantially limited in just one area – self-direction. Other documentation can be used to show this as well. It is likely that guardianship may just play a small role in the eligibility determination.”
He also mentioned that many families petition for guardianship because they are not sure what to do first. “Parents and families need to spend time reading the DDD eligibility manual, talking to experts who do evaluations, reaching out to service providers and building that body of evidence to show support for eligibility” for adult programs, Sey added. This information gathering can also help families make the best decisions about how to protect their children when they become adults.
START WITH SDM
Professionals from organizations that are involved in educating the public about SDM encourage families to consider trying SDM first. They can determine if the individual could continue to mature in their decision making, or if guardianship is warranted. Parents can also begin preparing their children for SDM by allowing them more involvement in decision making at younger ages, starting to represent themselves when appropriate at meetings with DDD and with their schools.
“We believe that far too many guardianships are granted,” said Jon Meyers, executive director of the Arizona Developmental Disabilities Planning Council. “Too many people seek guardianship when a child is capable of making decisions for him or herself with support.”
Sometimes parents start with guardianship for a soon-to-be adult, with the plan to undo guardianship later when the individual begins to show maturity in decision making.
Beth Papp’s parents petitioned for guardianship in time for her 18th birthday due to concerns about protecting her as a young adult. Now age 23, Beth has an autism diagnosis and was considered nonverbal at the time.
Beth’s mom, Becky King, said she didn’t know about SDM then. King now serves on an SDM advisory committee and has a strong desire to educate other families about alternatives to guardianship for their soon-to-be adult children.
King also encourages parents to reverse their thinking and consider SDM first. “Guardianship isn’t meant to be undone,” she said. “The court will want to know what has changed if the individual still has a disability.” It can be difficult to prove that an individual who was once determined unable to make decisions no longer needs guardianship.
Her daughter now communicates using the Spelling to Communicate method, which is not consistently recognized by courts or other legal entities. Still, the two actively speak out to teach others about alternatives to guardianship.
“Underestimating my intelligence is discrimination,” Papp said with her augmentative communication device. “Parents need to trust that giving support to make age-appropriate decisions is best.”