Arizona lawmakers plan to push for changes to a new bill that would educate parents of developmentally disabled children on guardianship options for when their kids turn 18, including less-restrictive alternatives, such as supported decision-making for the young adult, instead of full control.
The move follows talks with disability rights organizations and weeks of revisions to SB1411, which initially stated that a developmentally disabled child who receives services through the state’s Division of Developmental Disabilities (DDD) would immediately and automatically be placed in the guardianship of their parent once they turn 18.
Currently in Arizona, parents instead automatically lose guardianship over their child when they reach 18. The parent would have to petition a family law court to regain guardianship at that point. Guardianship or conservatorships over disabled adults can only be granted by a court if, after the process of interviews and examinations, the court finds the adult to be incapacitated or “unable to make reasoned decisions.”
Sen. Justine Wadsack, the Republican who introduced SB1411 last month, said that the legal process for gaining guardianship is long and costly. Wadsack, who has been open in Senate meetings about her experience as a parent of a disabled child, said that her legislation was meant to make it easier for parents to retain guardianship.
Several disability rights organizations spoke out against this initial version of the legislation. The Arizona Association of People Supporting Employment First (APSE) said in a statement that SB1411 was a “flawed and problematic piece of legislation that undermines the principles of autonomy, agency, and individual choice.”
“By automatically granting guardianship to the primary caregiver of a minor child upon the child’s eighteenth birthday, this bill denies individuals the right to make their own decisions and exercise their own free will,” the organization wrote in the statement.
A group of 19 organizations wrote a letter last month to the state Senate Judiciary Committee stating that the legislation has significant legal implications for disabled people. They added that the bill denies disabled people due process, and presumes that a disabled person is incapacitated. Under Arizona law, a developmentally disabled person is legally competent unless a court determines otherwise through the guardianship process.
Advocates for the disability community pointed out in the letter that guardianships of people with developmental disabilities may be a necessity for some families and that improvements to the guardianship system are needed in the state.
“The vast majority of people with disabilities are perfectly capable of making their own decisions about their finances and where they live and who they marry. And for the people who do need assistance, often they need much less than a full guardianship,” Kramer said.
“For those that do require a guardianship,” she added, “that’s fine, but the reason why there was such a furious reaction to this [SB1411] is because it’s such a big deal. Once you get in these things, it’s hard to get out.”
Wadsack and other lawmakers, in response to the strong opposition, crafted amendments to the bill. It passed the Senate on Monday with amendments that omitted language about immediate and automatic guardianships, a stark contrast to the original version.
The amended version states that if the child is able to express their preference in guardianship, their request will be given priority, and the parent and child must decide together to what extent the parent will be involved as a guardian. The amendment states that DDD can provide forms for the parents and child that the agency will use to grant guardianship without the family having to go through the court system.
“It’s time to put the onus of the process in the hands of the one state agency intimately involved in the parents’ and children’s lives, DDD,” Wadsack said in a statement, noting that with the current system, many parents are not notified in a timely manner that they will lose guardianship when their child turns 18.
But the amended bill that passed in the Senate still drew opposition. Wadsack and other Republicans invited a group of disability rights organizations and allies to a meeting Tuesday to talk more about the legislation and the concerns about guardianships.
Meaghan Kramer, managing attorney at the Arizona Center for Disability Law, who attended the meeting, said people were concerned that the legislation would grant DDD the power to award guardianships and deny disabled people due process when it comes to determining guardianship, which would otherwise be provided in the court system.
“I think that the entire disability community seems to be united in this. Our position is due process is critical and that if you’re going to lose rights, like the right to vote, the right to marry... whatever it is, you ought to have a hearing,” she told HuffPost.
Kramer said that the system should work so that parents and their child don’t require a lawyer to navigate these proceedings but that they should include a court hearing that gives fair weight to the rights, wishes and needs of the disabled person.
“If you meet the standard, and the court thinks that you’re the best person to be the guardian, then that should be something you can navigate without a lawyer, that shouldn’t be super adversarial. But it should be due process,” she said.
She added: “Certainly there are some people who we can categorize and say ‘These people wouldn’t need a hearing; all they need is a form.’ [But] when we start making generalizations like that, it just gets too dicey. Due process is not that high a standard when you have an obvious case… it’s just a protection for the people with disabilities.”
Kramer said that Wadsack seemed to come into the meeting between the organizations and lawmakers with a “very open mind” and “good intentions.” The conversation felt productive, Kramer added, and led to a potential solution that could fix the flaws of the guardianship system.
Kramer said Wadsack agreed to “strike” the versions of the legislation on the floor of the House so that the presumption that someone needs a guardian if they are a developmentally disabled adult is eliminated from the bill.
Kramer said that she and others now anticipate that Wadsack and other lawmakers will push for the bill to instead focus on ensuring that when a developmentally disabled child is close to 18, DDD will work with families to explore their options based on the child’s needs, such as supported decision-making (when a person with disabilities chooses their own network of advisers) or limited guardianships (in which the ward retain some rights), as well as resources and organizations that can assist in the process.
“I’m cautiously optimistic that that’s the direction it’ll go. That’s the commitment we have from the senator. I’m pretty sure that’s what’s going to happen, and there shouldn’t be any reason why it doesn’t. I think it’s much more likely that the bill just dies somewhere than she changes her mind,” Kramer said.
Wadsack’s office did not respond to HuffPost’s request to comment on this commitment.
Across the U.S., there has been a push to move away from and eventually end guardianships, which often don’t focus on what a disabled person wants and instead impose what others consider to be best for the individual. Guardianships also expose disabled people to abuse and neglect, Kramer said, pointing to Britney Spears’ former conservatorship as an example and emphasizing the importance of due process in these guardianship proceedings.
The National Center on Law and Elder Rights found that almost all states require that courts grant guardianships only as a last resort and should first consider less-restrictive alternatives. But a report by the Center for American Progress (CAP) showed that in Virginia, an average of 96% of guardianships granted from 2015 to 2021 were full guardianships.
CAP found that 1.3 million disabled people in the U.S. are under guardianships or conservatorships and that more than 90% of them remove all decision-making rights, leaving the ward little to no control over their finances, reproductive health, medical care and other aspects of their lives.
Many advocates for the disabled have been pushing for supported decision-making, which allows the disabled person “to decide their goals, the people in their life they trust and who they can go to for advice on certain topics,” according to CAP.
Advocates want states to fund models for supported decision-making, which a Human Service Research Institute study said can greatly increase self-esteem, self-advocacy, independence and happiness.