RICHMOND — Of Kate Fletcher’s three sons, Wesley, the middle child, has struggled the most to adapt to life in lockdown.
All three of the Fletcher boys have moderate autism, but 12-year-old Matthew has learned to adapt to not having school, and Henry, who is 6, has still been able to attend his day program, which has a total of 10 students and staff, keeping under the limit for gatherings set by Gov. Ralph Northam.
For 9-year-old Wesley, the loss of his routine has triggered compulsive behaviors. He’s been hoarding food in his bedroom, having accidents for the first time since he was a toddler and biting himself.
Fletcher has trouble helping him understand why he can’t go to his usual Thursday swimming lessons or why she can’t tell him when things will go back to normal.
On one recent Thursday, he was so distraught that he changed into his swimming trunks, sat in the car and cried.
“It broke my heart,” said Fletcher, a Chesterfield County resident and middle school history teacher.
As the coronavirus pandemic has disrupted lives across the globe, it also has intensified the unique struggles that people with disabilities and their caregivers face, even when there’s not a pandemic. Advocates and caregivers have reported that the state’s Medicaid programs that pay for services for people with disabilities have sometimes fallen short of providing sufficient support, leaving families on waitlists for years and sometimes cutting benefits with little explanation.
All three of the Fletcher boys are on the waitlist for the state’s Developmental Disability (DD) Waiver, which — based on an assessment of the person’s needs — pays for certain services, ranging from group day activities and in-home attendants to long-term residential care.
There are currently 13,163 Virginians on the waitlist for the DD Waiver, including 3,473 who are considered “priority 1,” or the most urgently in need of services. Chesterfield Community Services Board, which is responsible for mental and behavioral health services, has the third-highest number of people on the priority 1 waitlist in the state, with 346. Fairfax and Falls Church CSB and the Rappahannock Area CSB have the two longest priority 1 waitlists.
Matthew has been on the priority 1 waitlist for nearly a decade, and Wesley and Henry have been on it for about four years.
“If we had the waiver, it would be much easier for us to afford the therapies that they need,” Fletcher said.
Still, the Fletchers have received support from the Medicaid Waiver program. Matthew is enrolled in the state’s Commonwealth Coordinated Care Plus program, which provides long-term supports for people with complex needs. For Matthew, this means that the state pays for a personal attendant for him 30 hours a week. Fletcher has hired college students in the past, but more recently, her mother has stepped in to help care for Matthew and take him to appointments while both of the parents work full time.
“There was no way I could have kept my job and taken care of Matthew full time,” Fletcher said, adding that her work provided the family’s insurance. The other two boys have applied for the same waiver, but have been denied.
Across Virginia, there are 38,269 people enrolled in the CCC Plus program and there is no waitlist, according to the Department of Medical Assistance Services.
For some families, receiving compensation from the state to either hire an in-home attendant or to pay a family member to be a caregiver is the only thing keeping a person with a disability from having to live in a more institutionalized setting, such as a group home or a nursing home, where COVID-19 outbreaks have hit hardest.
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For Wanda Kelley, a single mom in rural Louisa County who takes care of her 27-year-old son, Christopher, the 60 hours per week that the state agreed to pay her under the CCC Plus Waiver program helped her stay afloat financially.
Christopher experienced a serious traumatic brain injury as the result of a car accident several years ago. Ever since he left the hospital, he’s needed his mom by his side to help him eat, bathe and walk.
“I can’t take my eyes off him at all,” Kelley said, explaining that Christopher has occasional seizures.
But last year, Kelley received a notice in the mail that her hours would be cut from 60 a week to 28 a week because the insurance company that the state contracted with to run the program said that the additional hours were not medically necessary.
With help from the Legal Aid Justice Center, Kelley went through a complicated appeals process and was able to keep her hours until she got the same notice of a reduction in hours in the mail in mid-March, just as Virginia was grappling with the beginnings of COVID-19.
“Now that the pandemic has hit, I’m dead in the water,” Kelley said during a phone interview last month. “I’m scared to death. I don’t know what to do.”
The Department of Medical Assistance Services, which oversees Medicaid programs, issued guidance that during the health crisis, insurance companies should maintain current service hours for any member who has an appeal of a reduction pending, according to Michaela Lieberman Martin, a health justice legal fellow for the Legal Aid Justice Center.
Lieberman Martin is working with DMAS to resolve Kelley’s case, but says that Kelley is not her only client who has experienced a reduction in hours and is struggling to confront a bureaucratic appeals process.
“For the last year, we’ve been working with dozens of clients who had the same pattern of problems,” Lieberman Martin said. “Some were struggling to get by with hours that had been reduced. Some had received new notices of reductions during the pandemic.”
A DMAS spokesperson said that she was unable to make someone available for an interview and was unable to answer a number of questions sent Wednesday related to DMAS’s administration of the Medicaid Waiver programs due to the agency’s ongoing response to the COVID-19 epidemic.
Lieberman Martin said that DMAS has been responsive to her clients’ concerns.
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Barbara Ledford, a Henrico County resident, said that, in the 22 years since her son, Carter, was diagnosed as having autism spectrum disorder at the age of 3, she’s experienced both the benefits and drawbacks to the state’s Medicaid Waiver programs.
Carter was enrolled in the DD Waiver program at the age of 9 after four years on the waitlist.
Ledford said the state’s help has given her much-needed support in caring for Carter, but because attendants paid by the waiver program earn relatively low wages — which she compared to what fast-food workers earn — it is difficult to keep consistent caregivers. The company she works with that sends attendants is frequently unable to cover all of the hours that the state allows, even after the hours have been reduced.
About $86 million in additional state and federal funds had been earmarked in Virginia’s proposed budget to increase Medicaid reimbursement rates for service providers, but that money was among the $2 billion Northam has suspended as the state grapples with the economic fallout from the COVID-19 pandemic and stay-at-home order.
The pandemic has been hard on Carter, as well, because he is used to going to a day program at the Faison Center, a nonprofit in Richmond that provides education and treatment services for people with autism.
With his program, Carter volunteers at the children’s museum, the library, Meals on Wheels and with other community organizations.
“The people who work with him are changed,” Ledford said. “Not being able to go out into the community now is really cramping his style.”
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DMAS announced last week that it had received federal approval to issue retainer payments to service providers that offer day programs — like the one Carter attends — to help them stay afloat while providers have had to close or significantly reduce services to comply with social distancing restrictions.
“We are pleased to be able to offer support to these critical providers who are so important to the quality of life of our Medicaid members,” said DMAS Director Karen Kimsey, in a press release. “These providers are valuable partners as we work together to ensure meaningful choices for community-based care, and we look forward to continued progress on this goal.”
But even as the Medicaid Waiver program is designed to keep people with disabilities in what is called the “least restrictive” setting possible with community-based care, such as living independently or at home with a caregiver while attending a day program or receiving services at home, some families who need a higher level of residential care for their loved ones also rely on the Medicaid Waiver program.
Jennifer and Damian Evans, of Henrico, said that they tried everything they could to help their son, Conor, stay at home. They took him to doctors who prescribed him medication after medication. Some helped for a while, until he got older, Jennifer Evans said.
Conor’s condition makes him extremely aggressive, Evans explained. When he was 2, he started trying to slam his head into the sidewalk. As a teenager he began attacking his family. He would tear padlocked food pantry doors off the hinges and would escape out of the house.
“He literally was just attacking everyone, not sleeping, trying to throw his head through glass,” Evans said. “It was awful, awful, awful.”
It got to the point that the stress impacted Evans’ health and she was hospitalized.
With coaxing from a social worker and her family, Evans consented to looking into group homes for Conor.
“Through heavy tears and sobbing, I relented,” she said. “It hurt me way more than it hurt him.”
For the past three years, Conor has been living in a group home with five other young men who have autism, and his parents said that he has been doing better than ever.
Evans said Conor thrives on the consistency that the group home offers and he has learned to respect the staff there, many of whom are bigger men who can handle his physical aggression.
Conor used to spend Wednesdays and Sundays at home with his parents and sister, but since the COVID-19 pandemic, because Conor’s sister works at a hospital and the group home is not accepting visitors, the family has had to transition to video chats and dropping off boxes of treats for the “boys” outside the group home’s garage door.
The Evanses worry about what would happen if Conor got the virus, but they feel comfortable with the way the group home has handled the situation.
They credit the Medicaid Waiver program with the new happiness that their entire family has found since Conor has gotten the help he needs.
“I have nothing negative to say about the system. I just wish there was more funding for this very special group of autistic people,” Evans said. “My heart breaks for the ones pleading for help and they don’t get it.”