Nancy Bach, 63, can handle most of the daily tasks for her 36-year-old niece, Elizabeth, who has developmental disabilities.
But Bach’s hands shake with persistent tremors, making it impossible to fill the pillboxes that sort her niece’s complicated array of prescriptions. The two of them need help, and good help is hard to find.
When others have sorted the pills wrong, Elizabeth Bach has ended up in the hospital for a week for overdoses. Other weeks she has missed crucial Trazodone because an aid counted wrong. Recently the home health agency just stopped sending anyone to do it.
Colorado is about to get $500 million over the next three years that advocates for people with disabilities hope will help solve problems experienced by the Bachs and many others. A bigger Medicaid match from the American Rescue Plan will help Colorado pay for things including better training for home health and personal care aids, retention bonuses, and new systems allowing caretaking families to directly hire their own choice of personal aid.
That’s extremely welcome news to Bach and her niece.
“I know exactly who I’d hire, and there’d be no issue,” Bach said.
The funds are a “once-in-career opportunity,” a chance to make systematic change in an industry that has long struggled to maintain workers, said Bonnie Silva, director of the state Office of Community Living at the Department of Health Care Policy and Financing, which includes the Medicaid program.
The Medicaid department serves about 60,000 people through community-based programs, meaning programs for those who live at home and receive community services instead of living in institutions. The division spends about $2.5 billion on those services each year. Still, the extra $500 million is “an extraordinary amount of money” that will allow Colorado to transform its in-home programs, Silva said.
“It would be a shame if in 2024 we find ourselves with the exact same problems that we have today,” she said.
Letting people like Bach hire help of their choosing, and providing a larger pool of home aids trained in what clients actually need, is exactly how the new $500 million in Medicaid money could make a difference for thousands of Colorado families if done thoughtfully, said Julie Reiskin, executive director of the Colorado Cross Disability Coalition.
“One of the problems I think we’ve always had in Colorado was that when we need to do something we were always in the situation where we have to do it cheap,” said Reiskin, who has for years been a leader of advocacy for more patient-directed home and community-based services through Medicaid. “And then we don’t do it right. So I think there’s a lot of systems change we could do that’s really exciting. And we have the time to do it properly.”
To come up with a plan to spend the $500 million, the state Medicaid department held seven meetings attended by more than 800 people, plus gathered online surveys from about 450 others. The No. 1 issue was easy to identify: the workforce shortage in the in-home care industry.
The challenge with the cash is that it’s a one-time allotment. Instead of just using the funds to increase the rate Medicaid pays to service providers, a boost that would end in three years, Colorado is trying to spend the money to come up with long-term fixes to a broken system.
State officials want to create a training pool where people who work in the industry could get help earning certification to care for people with more complex health needs. They plan to spend money to hire a contractor who would come up with new policies for compensation and benefits that would make in-home care a “viable industry,” in which people could make a living and expect to advance, Silva said.
Those new designs could include more avenues for clients like the Bachs to direct more of their care and payments, advocates noted.
The spending plan, which still needs final approval from the federal Centers for Medicare and Medicaid, also includes money for respite care. Those funds would pay increased wages for workers willing to care for people while their relatives or regular caregivers get a break.
Another part of the $500 million plan calls for hiring a contractor to study how best to transition large residential centers, such as nursing homes, into smaller settings. During the pandemic, smaller centers had more success keeping residents healthy, Silva said.
Targeting the “invisible waitlist”
Colorado has struggled for decades to keep up with the need among those who, despite severe disabilities or aging, want to live in their own homes.
The waitlist to get on a Medicaid program that provides round-the-clock, in-home services for adults with intellectual disabilities was about 15 years long seven years ago. State lawmakers have slowly invested in the program, and this year, the state plugged enough money into the program to enroll 667 on the waitlist, although there are still about 2,000 people waiting.
But the waitlist is only part of the problem. Families say that even when they get a spot in the program, there is still an “invisible waitlist” to actually find service providers to come to their homes to cook, clean and care for loved ones.
And while they are eligible for many of the services as they wait to get enrollment in the 24/7 program, it’s difficult to find workers who have openings in their schedule.
At other times, regulations require clients and their caregivers to hire people with qualifications above what they truly need to be helpful in an at-home situation, Reiskin said. In the Bachs’ case, for example, what they need is someone reliable, who can read prescription information, and has some basic people skills. The state and the disability support community could use the Medicaid infusion to design new regulations and programs that make sense for thousands more clients, she said.
Even before the coronavirus pandemic hit Colorado, the turnover rate among in-home service jobs was 82%, according to the Colorado Department of Health Care Policy and Financing. State officials suspect it’s only gotten worse in the last year.
Among workers who care specifically for people with intellectual disabilities, the turnover rate pre-pandemic was 40%, said Ellen Jensby, senior director of public policy and operations for Alliance Colorado, which advocates for people with disabilities. As Coloradans isolated themselves during the pandemic, many workers left the in-home care industry, she said.
“What we’ve heard from the providers is that they are having a harder time than ever right now trying to recruit people to come back into the workforce,” Jensby said. “They are trying everything to get people through the door, including recruitment bonuses. Everybody has a ‘We’re Hiring’ sign on their door.”
But unlike coffee shops and fast food restaurants, which can raise their prices in order to pay staff higher wages, the system for people with disabilities is dependent on reimbursement rates set by the government.
Providers who run day programs, such as adult daytime care or field trips to museums, are extremely low on staff, Jensby said, as are transportation providers and programs that provide job training and on-the-job support for people with disabilities.
“The result is they are not able to reopen many of their services fully,” Jensby said. “They just don’t have enough staff to bring everyone back. Families are like, ‘We’re ready! We’re vaccinated!’”
Still, there were stories of dedication from these other “first-responders,” the folks who donned masks and continued going to work each day alongside nurses, grocery store workers and others whose jobs couldn’t stop because of coronavirus.
“We saw the dedication really shine,” Jensby said. “There were people who quarantined for days or a week with families, … stayed with people they cared for instead of going home to their families. Just amazing stuff.”
Rate increases, along with reform
Alliance is thrilled that Colorado plans to use the extra $500 million to boost pay, recruitment and training for in-home care workers, but those workers need help in the short term, too, Jensby said. The advocacy organization also is pushing for rate increases now so that agencies can afford to pay the salaries and signing bonuses needed to hire workers.
In legislative and congressional hearings, people talk about how the workforce shortage in the in-home service industry has reached the level of a “crisis.” But Jensby said it’s been a crisis for decades — at this point, “it’s a systematic failure.”
The state legislature passed a bill, Senate Bill 286, that gives the health care department broad authority to spend the bolstered Medicaid matching funds once the state gets the go-ahead from federal officials. If all goes as planned, Colorado should get to start spending the $500 million by early September.