Sue Swezey, 83, has spent the last three weeks at home caring for her son John, who is 57 and severely autistic.
John needs 24-hour supervision. He cannot cross a street safely. The other day, he used a metal fork to free a piece of bread stuck in a toaster. His mother rushed in to pull the plug.
Before the coronavirus outbreak struck, John Swezey and people like him with intellectual and developmental disabilities received state assistance through a network of 21 regional centers that funded programs providing home health aides and other services. Those programs are now closed, and they could remain so for months.
That has left John confused and his mother struggling to get through each day.
“You are left to your own devices — you are the system,” Sue Swezey said by telephone from her Menlo Park home.
Across California, more than 360,000 people and their families depend on the safety net of programs for people with developmental disabilities. That net is now torn and frayed because of the coronavirus outbreak.
Those programs allowed many of the severely disabled to live at home and get help from in-house aides and day care. They also allowed other people with disabilities to live in group homes. Their fate is now far less certain because their close quarters, combined with their underlying health conditions, put them at risk of infection.
Although the state-funded programs are now closed, California is legally obligated to provide aid and has told providers to contact clients by phone. But service providers who often hold contracts with regional centers are difficult to monitor, and even with phone contact, many families question how they will manage the simple tasks of daily living.
A Palm Springs resident finds the serenity of a closed golf course the perfect place for afternoon reading during the coronavirus pandemic at Tahquitz Creek Golf Resort. (Gina Ferazzi/Los Angeles Times)
June Gilmore, of Laguna Woods, uses a loud speaker and sign to make her point while her husband, Brian Gilmore, honks his horn while joining mostly Laguna Woods seniors protesting after learning nearby Ayers Hotel will be used to treat homeless COVID2019 patients. (Allen J. Schaben/Los Angeles Times)
Adeline Hernandez, 2, of Riverside seems perplexed by the yellow caution tape as she approaches the closed off swing sets during the coronavirus pandemic at Ryan Bonaminio Park. (Gina Ferazzi/Los Angeles Times)
A family walk with dogs as they cross quiet Hillside Road in Rancho Cucamonga. as many residents observe stay-at-home orders due to coronavirus pandemic in Rancho Cucamonga. (Irfan Khan/Los Angeles Times)
A man dressed as Superman tries to give out free masks so people can protect themselves from CONVID-19 along Washington Blvd. in Marina Del Rey. (Genaro Molina/Los Angeles Times)
Cassidy Roosen, with Beach Cities Health District, holds up a sign that says, “We’re All In This Together,” while waiting to direct cars at a drive-through, appointment-only coronavirus testing location, at the South Bay Galleria, in Redondo Beach. (Jay L. Clendenin/Los Angeles Times)
Spyder Surfboards store owner Dennis Jarvis, right, and his son Luke, work on building skateboards as part of their “drive-thru” skateboard building at their flagship store in Hermosa Beach, CA, (Jay L. Clendenin/Los Angeles Times)
Aniza Serrano hands out one of 400 free orchids that were ordered for the now canceled Easter services in front of the church in East Hollywood. (Allen J. Schaben/Los Angeles Times)
Grocery carts block off the front parking area as Best Buy is open for curbside pickup only during the coronavirus pandemic. (Gina Ferazzi/Los Angeles Times)
On Sunset Boulevard in Los Feliz, Greg Barris, (in cowboy hat) picks up fresh produce he ordered through County Line Harvest, a local vegetable farm. (Carolyn Cole / Los Angeles Times)
Chantael Duke, 32, sits on the steps off of Sunset Boulevard in Los Feliz. She lost her two jobs due to coronavirus closures. (Carolyn Cole / Los Angeles Times)
Juliann Hartman, center, and her husband, Butch, wave signs they created to cheer up people mid-pandemic on Calabasas Road in Calabasas. (Mel Melcon / Los Angeles Times)
Grace Carter, 15, of Riverside, practices a dance routine at home after dance classes and school were canceled. She has to use the Zoom app on her iPhone to practice with her dance group.”It’s hard. My bedroom is a smaller space. I miss all my friends at the studio, ” Grace said. (Gina Ferazzi/Los Angeles Times)
Dusk falls in a deserted downtown Los Angeles on April 2. (Marcus Yam/Los Angeles Times)
A man works from his home in Long Beach. (Marcus Yam/Los Angeles Times)
Jerome Campbell takes a walk along Ocean Boulevard at dusk in Long Beach. (Marcus Yam/Los Angeles Times)
A San Bernardino County healthcare worker takes a sample at a coronavirus drive-through testing site at the county fairgrounds in Victorville. (Irfan Khan / Los Angeles Times)
A Metro general service employee disinfects a bench in Boyle Heights. (Gary Coronado / Los Angeles Times)
Vendors sell masks along San Pedro Street in the garment district of Los Angeles. (Luis Sinco / Los Angeles Times)
A runner jogs past the Pottery Barn in Pasadena. Some businesses in the area have boarded up their stores. (Al Seib / Los Angeles Times)
Raquel Lezama and daughter Monica Ramos collect meals for the family at Manual Arts High School. Lezama was laid off from her $17.76-an-hour job at a Beverly Hills hotel. (Al Seib / Los Angeles Times)
Homeless artist Matteo defends his work against removal by the Los Angeles Sanitation Department and police in Venice. (Jason Armond / Los Angeles Times)
Kylie Wortham, who was laid off because of the coronavirus, relaxes with a book in a hammock overlooking the beach in Huntington Beach. (Allen J. Schaben / Los Angeles Times)
People wearing face masks shop at the Santa Monica farmers market. (Kent Nishimura / Los Angeles Times)
A medical staff member enters Cedar Mountain Post Acute Care Facility in Yucaipa after 51 residents and six staff members tested positive for COVID-19. (Gina Ferazzi / Los Angeles Times)
The Iron City Tavern in San Pedro tries an incentive to lure takeout customers. (Carolyn Cole / Los Angeles Times)
The streets of San Pedro are quiet as people remain in their homes due to the coronavirus. (Carolyn Cole/Los Angeles Times)
Healthcare workers gather outside UCLA Ronald Reagan Medical Center to call for further action from the federal government in response to the COVID-19 outbreak. (Robert Gauthier / Los Angeles Times)
Kristen Edgerle of Victorville collects information from a blood donor before drawing blood at The Richard Nixon Presidential Library blood drive during the coronavirus pandemic in Yorba Linda. (Jason Armond/Los Angeles Times)
Jonathan Sanchez, manager of Choppy’s Produce Company at the LA Wholesale Produce Market, stands with an excess of inventory in the wake of the coronavirus Covid19 shutdown as LA’s produce wholesalers are seeing their business decline over 80%. (Al Seib/Los Angeles Times)
A woman has the sidewalk all to herself while walking along California St. in downtown Ventura. Foot traffic is very light as a result of the coronavirus outbreak. (Mel Melcon/Los Angeles Times)
A city worker, wearing a protective suit and mask, sweeps around the Echo Park Community Center that is one of several recreation centers in Los Angeles that has been converted for homeless housing to prevent the spread of the coronavirus. The center is filled to capacity with over 30 beds available to the homeless. (Genaro Molina/Los Angeles Times)
Shauna Jin of Los Angeles, with her dog, Bodhi, practices social distancing with John Kiss of Los Angeles at the entrance of Runyon Canyon Park in Los Angeles. (Gary Coronado / Los Angeles Times)
A maintenance worker cleans the entrance of Runyon Canyon Park in Los Angeles. The park is closed to the public because of the coronavirus. (Gary Coronado / Los Angeles Times)
A lending library had some additional useful items, including a roll of toilet paper and cans of beans and corn, in a Hermosa Beach neighborhood. (Jay L. Clendenin / Los Angeles Times)
Protesters drive by the Getty House, the home of L.A. Mayor Eric Garcetti, in Hancock Park. Tenant advocates are demanding a total moratorium on evictions during the coronavirus crisis. (Wally Skalij / Los Angeles Times)
Security guard Marcos Ayala of East Los Angeles helps the Hermosa Beach Police Department close off the Strand and a two-mile stretch of Hermosa Beach. (Jay L. Clendenin / Los Angeles Times)
The Strand and oceanfront of Hermosa Beach are closed in an effort to prevent crowds and slow the spread of the coronavirus. (Jay L. Clendenin / Los Angeles Times)
Mong Noiboonsok, left, and Rena Chastan have lunch at Crystal Springs picnic area in Griffith Park. (Irfan Khan / Los Angeles Times)
Venice residents Emily Berry and Gavin Kelley take a break at Venice Beach. Berry, a cocktail waitress at Enterprise Fish Co., lost her job due to the coronavirus outbreak, and Kelley, a manager at a performing arts school with a focus on music, said that he still has a job and that classes at the school will resume online this coming Monday. (Mel Melcon / Los Angeles Times)
Israel Torres touches up a new sign at a closed store along the boardwalk in Venice Beach. (Mel Melcon / Los Angeles Times)
The JW Marriott at L.A. Live is sharing a message of hope with red lights in 34 windows, creating a 19-story display on the hotel’s north side. (Gary Coronado / Los Angeles Times)
A Playa del Rey beach is nearly empty after L.A. County announced the closure of all beaches and trails in an effort to reduce crowds and slow the spread of the coronavirus. (Genaro Molina / Los Angeles Times)
The Manhattan Beach Pier is locked, and a city sign explains why in three repeated messages: “Lot closed,” “COVID-19” and “Social Distancing.” (Jay L. Clendenin / Los Angeles Times)
Juan Diaz Jr., a lifelong Dodgers fan, prays that the season will start by May in front of Dodger Stadium on what would have been opening day. (Mel Melcon/Los Angeles Times)
Hayley, CEO and founder of Love My Neighbor Foundation, right, dances with Crystal Armster, 51, while she and her colleagues continue to feed the homeless on skid row amid the pandemic. (Genaro Molina/Los Angeles Times)
A masked passenger on a Metro bus in downtown Los Angeles. (Wally Skalij/Los Angeles Times)
Members of the Los Angeles Fire Department wear protective gear while handing out coronavirus test kits at a parking lot on Stadium Way near Dodger Stadium. (Mel Melcon/Los Angeles Times)
Dede Oneal waits for a coronavirus test at the Crenshaw Christian Center in South Los Angeles. (Genaro Molina/Los Angeles Times)
A man in a mask passes a closed restaurant along Spring Street in downtown Los Angeles. (Wally Skalij/Los Angeles Times)
The Westfield Topanga mall parking lot in Canoga Park is empty amid coronavirus closure rules. (Brian van der Brug/Los Angeles Times)
Artist Corie Mattie paints a mural on the side of a pop-up store as a man takes a picture in West Hollywood. (Wally Skalij/Los Angeles Times)
Medical assistant Zoila Villalta works with Rosie Boston, 32, of Glendale, who is donating blood for her first time at L.A. Care Health Plan downtown. (Al Seib/Los Angeles Times)
A bus plies a route on the empty streets of downtown Los Angeles. (Luis Sinco/Los Angeles Times)
The lights are on, but the Santa Monica Pier is closed. (Luis Sinco/Los Angeles Times)
A couple wait for a bus outside the Petersen Automotive Museum in Los Angeles. (Luis Sinco/Los Angeles Times)
With all Los Angeles schools closed until further notice, LAUSD buses sit idle in Gardena. (Brian van der Brug/Los Angeles Times)
A lone traveler makes his way to catch a flight in Tom Bradley International Terminal. (Genaro Molina/Los Angeles Times)
Chandly Burres looks for items on the sidewalk at a deserted Venice Boardwalk. (Al Seib/Los Angeles Times)
Denise Young looks on as her daughter, Allison, 9, a fourth-grader at EARThS (Environmental Academy of Research Technology and Earth Sciences) Magnet School in Newbury Park, receives a Chromebook. (Mel Melcon/Los Angeles Times)
Hollywood Boulevard is devoid of the usual crowds. (Brian van der Brug/Los Angeles Times)
Michael Ray, 11, plays before a movie at the Paramount Drive-In. (Wally Skalij/Los Angeles Times)
Some also fear for their safety. Disabled people with certain conditions, such as severe autism, can harm themselves or others, especially when routines are disrupted.
“We are very concerned particularly about those low-income families, single-parent families who have no plan,” said Judy Mark, president of Disability Voices United. “There is no one to take care of the parent, and there is no one to take care of the child.”
California’s safety net is stronger than in the rest of the nation. The Lanterman Developmental Disabilities Act, signed in 1969 by then-Gov. Ronald Reagan, guarantees care for people who are diagnosed before age 18 as intellectually or developmentally disabled because of such conditions as epilepsy, cerebral palsy, severe brain injury or, increasingly, autism, from cradle to grave.
Gov. Gavin Newsom has spent far more than other states on the needs of Californians with disabilities. His January budget proposal earmarked $9.2 billion for the Department of Developmental Services in 2020-21, nearly double the state’s spending a decade ago of about $5.5 billion in constant dollars.
However, program operators have been struggling for years, and even with the Newsom administration’s investments, the system remains underfunded by no less than $1.4 billion, a study done for the state shows. The pandemic has only worsened that situation.
“I didn’t see a light at the end of the tunnel before this,” said Gregg Gann, who runs Westview Services Inc., a nonprofit in Anaheim that offers an array of services including job coaching for 800 people with developmental disabilities. Those services have all been shut down in the response to the coronavirus, and many of Gann’s workers face furloughs.
“The rainy day is here,” Gann said. “We don’t know if we’re going to survive.”
Caretakers still on the job face their own difficulties. Whether it’s an oversight or not, people who care for people with developmental disabilities noticed that they are not specifically included in Newsom’s 14-page order enumerating who is and isn’t an essential worker.
Maria Garcia, 51, of North Hollywood cares for Terrance, 77, a developmentally disabled man who has Parkinson’s and Alzheimer’s. His parents died, and Garcia is about all he has. He needs help with everything, including his most basic needs. Keeping six feet away is not an option. She has gloves, but no mask or protective gown.
“Of course, I do [worry]. I could get it. Anybody could get it,” Garcia said.
Garcia, a mother of five, works the overnight shift. Two adult daughters take day and evening shifts. When Garcia’s shift ends, she does work for other clients.
“No time for sleeping. All day, you are busy,” Garcia said.
She has been caring for such individuals for 15 years. “I love this kind of job,” she said. Why else would she be working for $15 an hour?
Angie Pena, 51, works in a regional center in Imperial Valley, near the Mexican border. From her home, she calls or video chats with her 103 clients daily, and worries about emotional and financial stress on those clients’ parents.
“You calculated that you would need wipes for this long, but now there is no day care, there is no program, there is no school,” Pena said. “I know it’s the parents’ responsibility to take care of their kids, but these were resources that they got used to having for years, and now it’s gone.”
Knowing that parents are struggling, leaders of the Autism Society San Francisco Bay Area offered grants of $250. The plan was to provide money to no more than 20 families in need.
The organization’s leaders were stunned when more than 400 people applied. The organization ended up doing a drawing and gave out 63 grants, said its immediate past president, Jill Escher, mother of a son and a daughter who have autism.
“Our kids are more expensive. They break more iPads. They break furniture,” Escher said.
Amanda Stevenson applied for and received the $250. She is a divorced mother who works as a manicurist, lives in the Bay Area city of Pleasanton, and cares for her 17-year-old son, Grant. Before the stay-at-home order, she would work at a salon while Grant would go to school and attend day-care programs. Now both are homebound.
Grant, she said, understands that there is something called the coronavirus, and he washes his hands. He is at risk because of his asthma. It was especially tough for her to explain to him that they would not be taking a vacation at Disneyland. It’s the one trip they take every other year. She had to assure him that although the park was closed, it would reopen and they would go when it is safe.
“I am sitting here trying to find out when it is healthy for me to go back to work,” Stevenson said.
In Texas, more than 70 residents and employees of the Denton State Supported Living Center, which houses 450 developmentally disabled people, have tested positive for the virus.
In California, there are reports of developmentally disabled people contracting COVID-19, including five in Orange County. One died March 28, said Larry Landauer, executive director of the Regional Center of Orange County.
But unlike many states, California closed large state institutions that once housed thousands of people with developmental disabilities. Most recently, the state placed the final few hundred residents of Sonoma Developmental Center in Sonoma and Fairview in Costa Mesa in smaller residential settings, lessening the chance of a widespread outbreak.
In John Swezey’s case, he was diagnosed as autistic in 1969, the year the Lanterman Act was signed by Reagan. Today, he is able to speak a few words and can read simple sentences.
But he needs to be monitored constantly.
His day program, Morgan Autism Center in San Jose, closed last month, as did all other such programs because of the pandemic. Complicating the situation further, the husband of one of John’s caretakers who helps out at their home has a sore throat and cannot risk infecting him and his mother.
The situation makes more real the question that weighed most heavily on parents of disabled people, even before this pandemic: What happens when they’re gone?
“We can’t die, and we really can’t get sick,” Sue Swezey said. “In this climate, who knows. Suppose I got the plague? What would I do? I don’t know.”
Last week, Sue Swezey connected with Ann Marie Palicio, who had worked with John at the San Jose day program. She has stepped in to offer respite care for a few nights.
Palicio considers the help she offers a calling. She has a brother who has cerebral palsy. As is so often true, she gets much in return.
“He accepts who I am without any question,” Palicio said. “It is a very comfortable relationship, not complicated. I appreciate the simplicity. In John’s own way, I believe he cares for me and I care for him.”
Morain is a contributing writer to CalMatters, a nonprofit, nonpartisan media venture explaining California politics and policy.