Bill seeks to ease process for seeking guardianship

Imagine you are a parent of a child with profound intellectual disabilities. You have helped your child overcome medical, educational and social challenges that are unimaginable to most parents. Then on their 18th birthday, you can no longer legally make important decisions for your child, whose disability means they will function as a child throughout adulthood.

This exasperating experience is why a San Antonio couple is advocating for HB 1675, a guardianship bill authored by state Rep. Steve Allison, Rsan Antonio. The bill includes several safeguards, some of which include: the process is only for people who have profound intellectual disabilities diagnosed by a licensed physician or psychologist, and caregivers must be a parent and primary caregiver who has never been the subject of an allegation, complaint or investigation concerning abuse, neglect or exploitation of the child.

David Thompson and his wife, D’anne Thompson, are parents to 20-year-old Caleb, who loves “Hamilton,” whose smile lights up the room and whose cognitive level is that of a 4-year-old because of a rare seizure disorder called Lennoxgastaut syndrome. The Thompsons contend that for them and other parents, the process of obtaining legal guardianship for their children is an intrusive, nonsensical and costly legal process. Advocating for this bill is a lonely feat; disability rights groups and lawmakers almost unanimously defend the opposite: safeguarding as many rights as possible for all. The Arc of Texas, which in 2015 supported the Decision-making Agreement Act that made Texas the first state to have a law recognizing supported decision-making agreements as an informal alternative to guardianship, told us it opposes HB 1675.

“We believe that all individuals have a right to self-determination, and all alternatives to guardianship should be explored before a guardianship is established. Individuals, with the appropriate supports and services, have a right to make their own decisions, and that right should not be usurped because that individual has an intellectual or developmental disability,” said Jennifer Martinez, The Arc of Texas CEO. “Any individuals for whom guardianship is sought should have their interests adequately represented to the court and not discarded simply because of their disability.” While we agree that rights should not be removed for most, the guardianship process for parents of profoundly disabled children is a burden too high — not only in time, effort and cost but in its emotional toll.

House Bill 1675 would make legal guardianship more accessible for parents of children who have profound intellectual disabilities — especially those parents who can’t afford to utilize the expensive legal system.

Adulthood is a milestone that should be celebrated, but this system forces parents to prove they are capable of parenting — and paying thousands in attorney’s fees to do so. “It’s insanely ridiculous and it doesn’t help the kids,” said D’anne Thompson. “Parents must purchase their God-given parental rights from the state if they seek guardianship of their child.”

Caleb was in the hospital, intubated, ventilated and one step from a coma when he turned 18, and the Thompsons had to prove they had begun the legal process seven months earlier to obtain guardianship. Married for 30 years, the Thompsons are educated professionals with the means to work through the cumbersome system to get guardianship, but many other parents are not as fortunate. As required by law, the Thompsons had to participate in an investigation that probed Caleb’s medical records and their financial records, and asked Caleb questions he couldn’t comprehend. They also had to pay more than $5,000 in court costs and attorney fees. The guardianship is only good for one calendar year, so they must go through an annual review and pay legal fees of $450.

It is unknown how many parents have children who are severely disabled. In 2019, there were 3.1 million Americans younger than 18 with some type of disability, according to the Census Bureau’s American Community Survey.

Allison describes his bill as “common sense relief and protection that will help countless families throughout our state that would change the guardianship law so that not all guardianship situations would be treated the same.”

We agree. The Thompsons and parents of other Texas children with profound intellectual disabilities would benefit from a law that shows compassion and pragmatism.