More than 60 people rallied in front of the Alabama State House this week in support of funding increases and legislation to support those with disabilities.
The rally was organized in part by the nonprofit Down Syndrome Alabama. Rally participants Bethan Higginbotham said among top priorities were to advocate for increased funding for developmental disability services. Additionally, rally participants were also calling for the passage of two bills: the Colby Act and Exton’s Law, two bills designed to eliminate discrimination against those with disabilities.
“We're here to advocate for an increase in direct support staffing because right now, direct support professionals in residential and day program settings are getting paid as little as $8.60 an hour; we can't keep any staff in the group homes (or) the day programs getting paid that,” Higginbotham told Alabama Daily News.
“Nobody wants to work for that, so everybody's understaffed, overworked, places are shutting down, and we need providers open, not closed right now.”
Higginbotham has over 20 years of experience in mental health care, and is currently the support coordination supervisor for Central Alabama Wellness, a nonprofit mental health care organization certified to provide services through the state’s Department of Mental Health.
Alabama’s dwindling mental health resources, which include disability resources, have been a frequent topic of discussion among legislators and state mental health agencies, with the state routinely ranking as having among the worst mental health resources in the country.
Maggie Danzer, another rally participant who has two special needs children and works as a case manager for CAW, said that the scope of those affected by the lack of disability resources was immense, and that without additional funding, would grow even greater.
“We have a waiting list with over 2,500 people on it statewide waiting to get these services,” Danzer told Alabama Daily News. “If providers are shutting down, there's going to be 3,000, 4,000 people on the waiting list.”
The Colby Act and Exton’s Law
Under existing law in Alabama, adults with disabilities may be placed under a guardianship or conservatorship by order of a probate judge, ending the individual's right to make decisions on financial affairs.
The Colby Act, which has been introduced this month in both the Alabama House and Senate, would allow for an adult with disabilities to enter into a decision-making agreement with an advisory group in lieu of a guardianship or conservatorship. The House version of the bill was introduced by Reps. Cynthia Almond, R-Tuscaloosa, and David Faulkner, R-Mountain Brook, while the Senate version was introduced by 21 state Senators, including Sen. Arthur Orr, R-Decatur.
“What legal guardianship does is it strips that person of their legal right to make decisions for themselves, and it gives it to a third party, whether it be a parent, sibling (or) lawyer,” Danzer said. “So what the Colby Act does is it takes that away and puts the decisions back on the individual (so) they are able to make their own decisions, and it gives them a team of people that support them.”
Exton’s Law, a form of which was filed in 2021 by Rep. Debbie Wood, R-Valley, but failed to pass, would prohibit discrimination against those with disabilities from receiving organ transplants. According to the nonprofit organization National Down Syndrome Society, people with disabilities face significant barriers to access organ transplants, with a 2008 study finding that 43 percent of organ transplant centers said that they “always” or “usually” consider whether a child has a neurodevelopmental disability when deciding to place them on their organ transplant or not.
With no federal laws restricting discrimination toward those with disabilities seeking an organ transplant, the issue is left entirely up to individual states, with 36 currently having laws similar to Exton’s Law in place. Higgibotham, Danzer, as well as the dozens of other disability advocates at the State House Wednesday, said they hope their advocacy can change that, as well as direct more funding toward disability resources in Alabama.