The $2,000 per month that Anna Hegwer receives from Medicaid to take her 11-year-old daughter on outings and teach her to cook and clean is helping keep her family from its breaking point.
Without it, the Parker mom would feel overwhelmed by the stress of trying to figure out how to pay the bills when she can’t take her eyes off her daughter, Chloe, who has an intellectual disability and severe attention deficit disorder.
“She is a tornado and nothing is safe,” Hegwer said. “We just can’t step into the world and function like everybody else. The older she’s getting, the harder it is. Her mind is like a 3-year-old’s.”
The fact that Hegwer gets paid to do some of the tasks that parents must do anyway — like taking kids to the grocery store or making them lunch — is at the heart of a touchy and controversial conversation that has gone on for the past three years within the federal and state Medicaid program.
The extraordinary circumstances of the COVID pandemic changed the rules in favor of parents, and now parents want to keep it that way.
Medicaid quickly restructured its policies when the pandemic struck, and many caregivers stopped entering people’s homes to bathe, cook and clean for people with disabilities. Under emergency rules, parents — instead of hired helpers — could get paid to provide those services. An estimated 1,200 Colorado families signed up.
Then, the government insurance program said it was taking it away, and the benefit was set to expire Nov. 11.
Last week, after an uproar from parents, Colorado Medicaid officials said they would continue allowing parents to get paid for the two programs — taking their kids into the community and teaching them “homemaker” tasks.
But the state has set a cap on the number of hours parents can get paid and will place further limits on the program to ensure that Medicaid is paying only for caregiving that goes beyond what all parents are expected to do.
“We have to be really careful that we have a good policy to make sure that we’re truly authorizing what would be considered extraordinary care versus typical care,” said Bonnie Silva, director of the Office of Community Living at the state Medicaid department. “An example might be that any 3-year-old requires support for bathing, but a 14-year-old doesn’t. So with the 14-year-old, we would absolutely pay for that, but for a 3-year-old, we wouldn’t necessarily provide support.”
The emergency rules “slapped” into place during the pandemic did not set those limits, so the Colorado Department of Health Care Policy and Financing, which includes Medicaid, is beginning that work now.
The process sets up an ongoing conversation about the state’s role in supporting people with disabilities to live in their own homes instead of institutions, and it comes amid a workforce shortage that means parents are often the only people available to provide that support.
“Everything is a battle and you have to fight for it.”
After Chloe was born, Hegwer had to leave her job as an elementary school teacher to take care of her daughter full time. Over the years, she’s hired caregivers to help in their home, take Chloe to activities or provide respite for Hegwer. Finding people willing to do that work, even before the pandemic, was hard, and several quit because Chloe was too much for them to handle.
“I’ve tried finding people to do it for her,” Hegwer said. “They just don’t have an understanding or they are intimidated by her. Nobody knows them better than we do, and we’re reliable. We’re showing up every day.”
Hegwer is paid by Medicaid for 10 hours per week of “enhanced” homemaker services, in which she teaches Chloe how to prepare meals and clean up afterward, vacuum and clean the bathroom. She is also paid for 10 hours per week “community connector” services, in which she takes Chloe into the community and tries to teach her how to act appropriately — watching for cars in parking lots, riding bikes to the park, behaving calmly in the grocery store.
Colorado Medicaid, when it decided to keep the program, added a cap of 10 hours per week for each of the two services, the same number of hours that Hegwer receives now.
Hegwer said that while she loves her daughter, she would not have chosen this life. The notion that parents getting paid for taking care of their children are trying to take advantage of Medicaid is preposterous, she said.
“That would be absurd,” she said. “Everything is a battle and you have to fight for it. It’s so exhausting.”
The reason for the policy whiplash in Colorado has to do with federal rules. For much of the past year, the federal government has been warning that emergency policies put in place during the pandemic would expire. Colorado Medicaid had told families the parent-caregiver benefit would end in November.
Then in August, the federal Centers of Medicare and Medicaid Services reversed course, saying state Medicaid programs could make the parent-caregiver benefits permanent.
“We were pretty shocked,” said Silva, with the Medicaid department. “We kind of had to pivot. And then we have a very tiny amount of time to figure out if this is something we can implement.”
It took two months for Colorado officials to announce they would extend the program — an announcement that came within a month of the program’s previously announced expiration date.
Meanwhile, parents who have relied on the benefit for the past three years have been panicking, said Stacy Warden, who cares for her 14-year-old son, Noah, who has cerebral palsy. “It’s really become our lifeline for three years,” she said. “They designed these waivers to keep children out of institutional settings, but they’ve got to give us more support if that’s going to work.”
Whether parents are paid, many would have continued providing the services instead of hiring someone to do it because finding someone to take those jobs is nearly impossible, Warden said. “Noah is like having a 3-month-old baby in a 14-year-old body,” Warden said. “No one wants to do that for $15 per hour.”
Parents who are taking care of children with severe disabilities have given up careers or, in many cases, the chance to earn any money at all outside their homes. The hours paid through the homemaker and community connector Medicaid programs account for only a fraction of a parent’s day of caregiving, Warden said.
“It’s not free money where we are sitting here not doing anything,” she said. “These are tasks we are doing on top of our regular caregiving.”
Parents are celebrating, cautiously
Extending the benefit for parents will fit well into Colorado’s long-term strategy to move toward “Community First Choice,” said Silva, from the Medicaid division.
The legislature approved Colorado’s plan to transition by July 2025 to the program, which is optional for states under federal law. It allows more flexibility for people with disabilities to pick and choose services that help them with daily living, instead of keeping those services bundled up in more comprehensive programs.
Most people are using 10 or fewer hours per week of the parent-caregiver services, so the cap will not affect many families, Silva said. The policy will also allow for exceptions if families need more, she said.
Parents celebrated the news that the policy would stay in place, but said they are concerned about the cap and additional guidelings that are coming.
Some said they had begun thinking of alternatives, if needed.
Parents raising kids with disabilities already meet at parks, libraries and theaters to connect with peers and to support each other, so they could sign up to serve as official “community connectors” for each other’s children. Each would get paid by Medicaid for taking a child with disabilities into the community — but for a child who wasn’t their own.
One group of Douglas County parents, for example, was planning a get-together at a movie theater.
“We know it’s going to be a shitshow. They are going to make noise and people are going to walk out,” said Aleia Mastroianni, who cares for her 11-year-old daughter with autism in Castle Rock and is on the Douglas County Special Education Advisory Committee, “but we want to do it together.”
The co-op idea illustrates the injustice of not allowing parents to get paid for caregiving, she said. “I would love for them to come look at my medical bills and tell me I’m taking advantage,” Mastroianni said. “It in no way offsets all that.”
Colorado Springs mom Briana Anthony gets $31 per hour to take one of her four kids on community outings, during which she has to manage kicking, biting, screaming and public tantrums.
“We’re going to spend the money now, or we’re going to spend the money later,” Anthony said. Because kids who don’t learn how to act in public could end up “sitting at home not able to care for themselves.”