A family had the only help for their special-needs child ripped away by a government mandate issued in response to the Chinese coronavirus. Exhausted by the round-the-clock care she shoulders, a Texas mother pleads for help to pressure Gov. Greg Abbott to restore her family’s lifeline.
“Through this whole ‘COVID-Quarantine-[Quandary]’ we’ve been in – not one family member, church member, typical friend, or worse enemy has initiated any call, e-mail, text, or smoke signal asking [how we’ve been affected],” an exasperated Michelle Guppy wrote in a personal blog post. “There are worse things than dying.”
Todd and Michelle’s son, Brandon, is a special-needs adult who lives with them and requires attentive care 24/7, or else he is likely to hurt himself. His mom can’t easily do things like mow the lawn or mop the floor, because such things overstimulate Brandon. “When I stop, he goes in full melt-down where he bites himself. Pinches himself. Screams endlessly,” Michelle wrote.
That’s where Brandon’s day habilitation program came in. “They are day habilitation programs that receive state funding through the Medicaid waiver programs, which is the only kind of program that I can afford,” Michelle told Texas Scorecard. Those with special needs in group homes, or those who live with their families, travel to where these programs are held.
It gave Brandon care he needs, and it has been a lifeline for the Guppy family.
Then with the arrival of the coronavirus, Texas’ state government yanked it away, cutting Brandon off from the only access with the outside world he can handle, and sending his parents to the point of exhaustion—an exhaustion we could hear as Michelle spoke with us.
“It’s not like I can take him shopping, it’s not like I can take him to a park. It’s too much for him,” she said. “Families like mine … in a way, we live in a prison because our world is so small and so confined.”
“What they’ve done by making the day programs be closed for whatever reason, they’ve just put us in solitary confinement. It’s incomprehensible.”
How exactly was Brandon cut off from this program?
“From my understanding, the particular day program that accepts Medicaid funding that my son goes to, they also serve group homes that are again funded by state Medicaid programs,” she explained. “Once this quarantine-whatever started, they were directed by (I’m assuming) [Texas Dept. Health and Human Services]—which is the governing authority for group homes—that they could not transport their clients outside.”
What this meant was that those living in the group homes could continue receiving care from day habilitation programs, provided they stayed there. Because Brandon lives at home, he was barred from participating.
“We were screwed because of it,” Michelle said. “Group homes still got their 24/7 care, but parents who care for their loved one in their home got nothing.”
One might think the simplest solution would then be to just have him moved into one of these group homes, but it’s not that simple.
“We’re number 80,000 on the waiting list to even get a slot for that,” she laughs. But even if that weren’t the case, Gov. Abbott’s current coronavirus mandates would give Michelle and her husband a stark choice: be driven to exhaustion caring for Brandon 24/7 at home, or be banned from being with him like parents such as Stephanie Kirby, who’s not seen her special-needs son in months.
“Essentially, what you have are parents whose loved ones are in the group homes; they’re not able to see them,” Michelle said. “And then you have parents like me, who care for our kids in our home.”
“It’s just incomprehensible, the situation they put families like [mine] in.”
Who gave the order that resulted in cutting Brandon off from his day program?
“That’s the elusive question,” she replied. “I guess some committee that’s providing input to the governor is making these decisions, but I don’t know. Certainly no one who has to care for these kids 24/7 is making these decisions.”
“I’ve been calling my representative [to find out],” she said. “I finally quit because they don’t have a clue.” She’s represented in the Texas House by State Rep. Tom Oliverson (R–Cypress).
As the days drag on with Brandon being isolated and his parents being driven to exhaustion, there has yet to be a clear exit strategy from HHS. “It’s [an] elusive black hole to figure out what the policy is that dictates when they can transport back so they can open for us all,” Michelle said. “There’s just no information.”
“If they’re waiting for our kids to be able to wear a mask and social distance, then that’ll never happen. This population can’t do either.”
What can Texans do to help?
“Contact the governor or whoever’s making these decisions to keep these day programs closed,” she replies. “Let the group homes transport. There’s no difference in letting the group homes transport those clients to the same program with the same staff every day and back than the staff coming from their home to the group home and back.”
If you or anyone you know has had a similar experience from government mandates in response to the coronavirus, we’d like to hear from you. Please contact us at firstname.lastname@example.org.