Adult Day Health Care programs across the state fight to keep funding

At 11 in the morning on any given weekday, some 60 adults, mostly seniors, at Guardian Adult Day Health Care in El Sobrante do a series of chair-based exercises and games.  They’ve already eaten breakfast, heard the newspaper read aloud to them and discussed current events.  After exercise, they’ll have lunch and play games designed to stimulate the mind.  Over the course of the day, their blood sugar levels will be checked, insulin and other medicines administered.  They’ll receive individualized physical, speech and music therapy and have help with basics like going to the bathroom.  For many seniors at Guardian and their families, the center offers care that keeps their loved ones out of nursing homes and safe.

But funding for the program was cut from the state’s budget this summer, and unless a lawsuit challenging the cuts is successful, the program will disappear at the end of this year.

The Adult Day Health Care (ADHC) system, which is run by the California Department of Aging and funded by a combination of state and federal Medicaid funds, was set up to serve frail seniors and adults with physical, cognitive, and mental disabilities who, with the right combination of services, can safely live in the community, rather than in a nursing home or psychiatric institution.  Adult Day Health Care centers provide not just daytime supervision, but also a combination of physical therapy, social work and nursing services.

Peter Behr, who founded Guardian with his wife in 1994, wears many hats: Chief financial officer, administrator, and music therapist.

“These are the aged, the blind and the disabled. They’re people’s parents who worked their whole lives and paid into the system, and now they need help,” said Guardian director Peter Behr.

Most of Guardian’s more than 130 patients are from Richmond and nearly 90 percent are paid for by Medi-Cal. The patients served by Guardian range in age from 20 to 104 years old. They speak English, Tagalog, Hindi and Spanish.  Many are seniors with some degree of dementia, many are diabetics, and almost all are low-income.  Most live with family members, some live on their own, and some live in state-funded board and care group homes.  But Behr says that all of them were approved for ADHC because the center combines the supervision, physical therapy, nursing and social work services they need.  Without the program, he worries that they will end up unable to get those services.

But the California state budget passed in June eliminated the Adult Day Health Care program; the program is currently slated to end on December 1.  The program costs the state about $169 million per year, or $36 per patient per day for the over 35,000 ADHC patients, which was matched by federal Medicaid funds.

Earlier this month, legislators in Sacramento passed a bill to establish a “Keeping Adults Free from Institutions” program that would designate—pending federal approval and matching funds—$85 million to ensure that people who use Adult Day Health Care services are able to be get the services that would no longer be provided by those programs once funding is cut.  On Monday, Governor Brown vetoed the program.

“While my Administration deeply shares the goal of ‘Keeping Adults Free from Institutions,” his veto message reads, “creating a new ADHC look-alike program at this juncture is unnecessary and untimely.”  His letter said his administration is working to create a transition plan that will ensure that people who rely on the program will get the care and services they need from community and home-based services and be able to remain in the community.

But Disability Rights California staff lawyer Elizabeth Zirker says it’s not likely to happen.  “We’re going to have to be working closely with providers and our participants to see what state is doing between now and November,” she said.

"Music can unlock parts of the brain that are locked out in people with Alzheimer's and Parkinsons," Behr says. He plays guitar during lunch in addition to doing music therapy for Guardian's patients.

This is not the first time the program has been cut.  In 2009, then-Governor Arnold Schwarzenegger’s budget called for a reduction in the maximum number of days Medi-Cal would pay for adult day health care, from five to three days per week.  Disability Rights California and a handful of similar groups sued on behalf of several elderly individuals with disabilities who use ADHC to oppose that reduction and won, keeping the program intact.  They argued that the state failed to provide adequate alternative services to keep ADHC patients in the community and out of institutions, a requirement of the Americans with Disabilities Act.

The state’s 2009 budget also called for restricting the eligibility criteria to reduce the number of people using adult day health care services, which was also struck down.  An appeal to reinstate that restriction is still pending, although it will be moot if the state’s attempted elimination of the program is not blocked by the court.

Earlier this month, Disability Rights California, along with the AARP, National Senior Citizens Law Center, National Health Law Program and Morrison & Foerster LLP, filed an addendum to the 2009 lawsuit for an injunction to stop the most recent attempt to eliminate the program.  US District Court Judge Saundra Brown Armstrong, who ruled to maintain ADHC services before, will hear the case in November.  If Brown Armstrong approves the injunction, the program will remain intact.

In the meantime, advocates say that cutting the ADHC program will be counterproductive and cause problems for program participants and their families.

“This program is designed to keep people out of institutions, so wholesale elimination just seems wrong-headed and really it’s going to cost the state a lot of money in the long term,” Zirker said.  Nursing homes are mandatory under Medicaid law, and that’s where many people would likely end up, she said.  That would cost about $5,000 per week for each person, she said, compared to roughly $715 per week for someone who goes to adult day healthcare five days a week.

Many participants would end up in emergency rooms after manageable conditions like diabetes turned into medical crises because they were no longer receiving regular nursing care, she said.

Additionally, said Behr, the change would profoundly effect families, who rely on centers like Guardian so that other family members can go to work during the day. “Nobody seems to be thinking about the effect on the caregivers,” Behr said.

Kim Timmons’ grandmother, Veora, has been going to Guardian for nearly 15 years.  Veora Timmons, a widow for decades, started going to Guardian as her health declined from diabetes and other ailments, and relied on the center for help managing her blood sugar and insulin levels.  She also enjoyed the community and having a regular schedule that got her out of the house, her granddaughter said.  Over the years, dementia set in, and Kim Timmons quit her job in Emeryville to move to Richmond and take care of her grandmother.  She says she relies on the services Guardian offers, but also the break she gets during the day when she can stop being a caretaker and have time to herself.

“I don’t think people really understand that this is more than a full-time job.  This is 24 hours a day,” she said.  Her grandmother also benefits from having structure in her day, she said.  “Sometimes she’ll wake up really early so that she can get ready for ‘work,’—that’s what she calls it,” she said.

“A lot of our participants, especially our seniors who live alone, say that this is the only time they leave their house,” said Jena Nawy, Guardian’s program director.

Some days, Behr says he spends as much time advocating for Guardian’s patients to make sure their access to the services his center provides remain intact as he does in his official roles as the center’s administrator, financial planner and music therapist.  He says navigating Medi-Cal and Veteran’s Affairs benefits can be incredibly confusing, and worries that if the ADHC program is cut many of his patients, even with their family members’ help, would not be able to get the services they need paid for.

“What will happen is most of our people will end up in nursing homes or on the streets. Some of our people live with their children who work.  They would likely injure themselves, have medical crises or die,” he said.