Adele Barlow clearly recalls her brother Craig’s 18th birthday. It was over four decades ago, but the shock of learning that he’d become a legal adult — with all the rights and responsibilities it comes with — stays with her to this day. Craig has Down syndrome, but in New Jersey and across the United States, 18 is the age all individuals, regardless of developmental disability, earn independent decision-making rights.
“My mother, in her will, designated our older sister to be his legal guardian. She also specified that she wanted him to spend equal amounts of time with all of his other brothers and sisters,” Barlow said.
Barlow’s parents filed for the guardianship, but when Barlow’s mother died the process got messy. Craig wanted to live with Barlow and her husband. Her sister, the designated guardian, contested it.
“We had a three-day trial and the judge ruled that she was going to abide by my mother’s will,” she said. “And I knew that was wrong. There was just so many reasons why she shouldn’t do that.”
Barlow learned a little known fact: wills don’t allow for the transfer of legal custody, they only account for the preference. She eventually won the guardianship battle. Though she admits her situation was highly complicated, it’s a scenario not unlike many others playing out for families of the developmentally disabled across the state. She says many don’t learn of the need to file for legal guardianship until there’s a crisis.
“If you want to make decisions for this person, any decision, I’ve had to show my guardianship papers,” Barlow said.
Paul Aronsohn says the issue to designate legal guardianship is one of the top concerns keeping parents and caregivers of the developmentally disabled up at night.
“That should be part of the transition conversation because parents and families need to be prepared by the time a child turns 18 — they are an independent adult,” said Aronsohn, who serves as state ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families.
Many spend years and thousands of dollars on lawyers to cut through the state’s red tape. Aronsohn says it’s all unnecessary.
“We need to do a better job explaining to families that there are other alternatives, too. It doesn’t have to be general guardianship. There can be supportive decision making, that there can be limited guardianships,” he said.
In New Jersey guardianship is a court-approved legal relationship between a competent adult and a minor child, or an adult declared legally incompetent. Once the guardian is appointed by superior court, only the court can modify or change the order. As the philosophy of inclusion for developmentally disabled adults has evolved, so too have the options surrounding this relationship.
“Increasingly, there are alternatives to guardianship which completely deprive somebody of their right to make decisions on their own behalf,” said Deborah Spitalnik, founding executive director of the Boggs Center on Developmental Disabilities.
The Boggs Center is New Jersey’s federally designated University Center for Excellence in Developmental Disabilities and part of Rutgers Robert Wood Johnson Medical School. The organization’s sole mission is to educate students and the community about topics like this.
“What we’re trying to infuse through the teaching we do, through programs, is the idea of supported decision making — that people can be supported in various ways to make the decisions that affect their lives,” she said.
According to Spitalnik, if put in the wrong hands, full legal guardianship of an intellectually or developmentally disabled individual has potential for abuse. And is only necessary, as in Craig’s case, when the person is unable to care for their basic needs, finances or medical issues.
“There’s a need for tremendous amounts of education about what peoples’ legal rights are and to make sure that people who need support and decision making have that support, that families have standing, but that we do it in a way that’s more balanced, more nuanced, in not making automatic assumptions about what peoples’ capacities are for decision making,” said Spitalnik.
Limited guardianship, for example, covers decision-making around where to live, go to school, handle money, legal and medical choices. It’s good for those who are capable of making some, but not all decisions. Power of Attorney holds similar status, but the individual has to understand, on a basic level, they’re appointing someone else to make choices on their behalf. A lesser-known option is the POLST, physician orders for life-sustaining treatment, used when the person is nearing the end of life.
While advocates agree, people placed in guardianship can be considered vulnerable, there are still many instances where it’s necessary and families need to be ready.
“If you went to the doctor office and they start asking you questions and you can’t speak for yourself, and they want you to go get a medical procedure that’s emergent and you say nothing, yu gum up the entire process because in this world liability is critical. And being clear on who to go to for the decisions can make the difference, just like getting lab work in diagnostics, and the care delivery can be delayed, bad decisions can be made,” said Steven Cook, executive director of The Arc Mercer.
The ARC Mercer is one of the only community-based services for people with special needs and developmental disabilities in Central Jersey. All of the doctors and medical specialists are highly trained in care giving and spotting legal gaps.
“I’ll go to the hospital, I’ll meet with the nurses as soon as they go to the emergency room. No matter where they go, I’ll be there, the staff will be there. So if we can explain to them who they are, what they can understand, what sets them off, how to redirect them, and everything else that they need to know to make it easier on both staff and the consumer,” said Carol Bastian, a registered nurse at The Arc Mercer.
“We know who the guardians are when we take them in. And I think from a behavioral perspective, we work really well with individuals with developmental disabilities to try and make sure they’re making the right decisions. But our model verses other models where maybe a doctor who doesn’t have as much experience with special needs and is seeing someone because they’re local and available, that process ther’re not comfortable with or they’re not even aware of,” said Cook.
Advocates say families should regularly revisit the conversation, especially as circumstance change, individuals age, and mental and health capacities decline.
“God forbid something really awful happens medically and decisions need to be made about feeding tubes or not feeding tubes, you definitely have to have legal authority otherwise the state can step in and say no you can’t terminate this person’s life, or you have to put that feeding tube in, which might not be the family’s choice,” Barlow said.
Adding, that authority shouldn’t be taken lightly, because advocates say more often than not it’s the guardians who get so much more out of giving.
“Aging and the Unknown: Adults with Developmental Disabilities” is a four-part series that dives into the complexities and challenges for those aging with intellectual and developmental disabilities.