Gary Sandberg is a 37-year-old man with cerebral palsy. He lives with his sister and uses a motorized wheelchair.
Belinda Foley is a 56-year-old woman with intellectual disabilities and medical issues. She lives in a group home for developmentally disabled people. Both receive care under the state’s developmental disability waiver program, commonly called the DD Waiver. And both are suffering unnecessarily – and will continue to suffer if the state can’t come up with flexible responses to the COVID-19 pandemic when it comes to the disabled population it is entrusted with caring for.
The state Department of Health’s orders have prevented a physical therapist from going to Sandberg’s home – he lives with his sister, Celina Phelps – for the past three and a half months. This despite the fact that medical facilities, including physical and speech therapists, were allowed to reopen weeks ago as long as they followed safety protocols. Inexplicably, therapeutic services for disabled people on the state’s programs are still restricted to telemedicine. That’s not an option for Sandberg. “The therapist has to get him out of the wheelchair, onto his bed and help him stretch and do other exercises,” Celina Phelps says.
Without therapy, Sandberg’s condition has worsened. His sister says his only option now may be turning to pain medication – which he doesn’t want to do.
It’s a choice he shouldn’t have to make.
In Foley’s case, critical visits with her parents have been taken away. She had been spending three days a week with them under a waiver that was overruled by Health Secretary Kathy Kunkel. Now, she can no longer go to their home. And they can’t visit her at the group home.
Albuquerque attorney Peter Cubra, an advocate for disabled people, contends the blanket prohibition on visits discriminates against those with developmental disabilities and is causing Foley “irreparable harm.”
The state’s safety rationale behind the policy doesn’t hold up, Cubra said, because the seven direct-care staffers at the group home are allowed to go home to their families, shop and go to restaurants – and then return to their jobs.
Cubra pointed out that people without disabilities, including those who reside in group settings including government-funded homeless shelters, detox facilities and boarding homes, are allowed to visit families and return. He is not asking for a blanket relaxation of rules that allow disabled residents and families unlimited access. He is asking that the state make individual determinations about family visits and other issues. In other words, treat these vulnerable individuals as individuals instead of issuing blanket rules with no flexibility for the reality they live in.
Kunkel denies the state is being discriminatory and says it is only protecting this vulnerable population.
The cases of Sandberg and Foley reported in The Sunday Journal by investigative reporter Mike Gallagher follow his report from June 28 on other developmentally disabled people who weren’t receiving a wide range of services, from literacy to speech therapy, under the DD Waiver even though the provider agencies were being paid 80 percent of their normal compensation.
While the initial shutdown in response to COVID-19 was justified, and most likely saved lives, it’s past time to think of creative ways to get programs back up and running.
Those clients are in a different category than Sandberg and Foley, who are in home or group home settings. But the tangible harm is the same to all of them.
In Sandberg’s case, his therapists believe he can be treated safely at home. And for Belinda Foley, surely there is a way to allow some form of visits – perhaps with testing and screening or socially distanced visits in an outdoor setting.
Creative thinking and flexibility are in order here. Because what is being done to Sandberg, Foley and others like them is nothing short of cruel, despite good intentions by the state.
With all of the pressing needs facing our governor, this one needs to rise to the top. Steps need to be taken to address this.
This editorial first appeared in the Albuquerque Journal. It was written by members of the editorial board and is unsigned as it represents the opinion of the newspaper rather than the writers.