KREMMLING — Alta Sue Hawkins’ room is filled with what she calls her most important things. The sewing machine she likes to make aprons on. Dozens of books. A wall of family photos.
It’s been her home for the last three years, tucked inside Grand County’s only assisted living facility. And it’s the place where she wants to die.
With her cancer metastasizing, Hawkins, 85, decided last summer she didn’t want to go back to the hospital. She entered hospice, where just palliative care is delivered to those with six months or less to live.
She is among just a few dozen residents in this 15,700-person county that receive home health or hospice care, making her a bright spot in an often bleak health care landscape in rural Colorado.
As recently as June, Grand County had no home health or hospice provider.
Surveys show most Americans would prefer to age and die at home, but home-based care can be vanishingly hard to find in remote regions. A majority of Colorado’s 800 home care and hospice agencies are concentrated along the urban Front Range, a state association said, and demand for the services is only expected to increase as the baby boomer generation ages.
Colorado is projected to have 1.2 million residents aged 65 and over by 2030, up 50% from 2018. It’s one of the fastest aging states in the nation.
“Our long-term care support system in Colorado is not where it needs to be to meet this really fast growing population,” said Chrissy Esposito, policy analyst at the Colorado Health Institute.
Home health is often substantially cheaper than staying in a long-term care facility, and lets patients remain close to loved ones and live more independently. Thanks to disability rights activists and a series of pilot and waiver programs, Colorado has been a leader in helping people stay in a more comfortable home setting whenever possible.
But advocates for the industry say home-based services are difficult to sustain in rural areas due in part to the low number of patients, the long distances between their homes and a chronic shortage of workers, who often receive low pay for intimate, hands-on care.
The difficulty is already evident in communities like Grand County, which for eight months had no hospice or home health provider. A nonprofit that had been providing those services, Northwest Colorado Health, left last November due to a shortage of workers.
Community members tried to fill in gaps. Primary care physicians made home visits to change dressings and manage medications. Sheriff’s deputies were sent out for wellness checks.
Patients needing home health or hospice stayed in hospitals or moved to nearby counties. Some traveled to clinics, requiring help with transportation. Many went without care.
“It was really, really hard to watch,” said Jennifer Fanning, executive director of the Grand County Rural Health Network.
Lingering in hospitals can be costly and keep patients away from their families, as advanced care is often available only at larger urban hospitals, she said. The county also has no nursing homes, so residents must move out of the county to stay in one.
(The assisted living facility Hawkins lives in, which has a waiting list, provides only nonmedical care, along with help managing medications.)
Fanning spent months scrambling to get another home health or hospice provider to come to Grand County. She called agencies in Grand Junction, Glenwood Springs, Boulder, Colorado Springs and around Denver. She was turned down again and again.
“Pretty much the answer was ‘No, we can’t afford to come there,’” she said.
After several months, a for-profit provider working in the Denver-area, Namaste Home Health + Hospice, agreed to expand into Grand County starting last summer. It currently has 40 home health and hospice patients in the county, including Hawkins. The agency is expected to be operating at full capacity by 2022, Fanning said.
Without Namaste, “we didn’t have a solution, because there was none,” she said.
It’s unclear how many older adults want home-based care but are unable to get it.
Fanning said around 80 to 90 people in her region received home health care each year between 2017 and 2019. Twenty received hospice, suggesting about 70 residents may currently be unserved.
Namaste is part of a network of health care agencies across the country, and is associated with a nonprofit that pays for services not covered by public or private insurance, said Katie Sue Van Valkenburg, a medical social worker who works with Hawkins. It also funds perks meant to increase comfort, like air conditioning units, massage therapy and celebratory events, she said.
Hospice isn’t meant to hasten or prolong death but to provide “comfort and love,” she said.
Local health care officials believe Namaste’s scale will help it overcome challenges that plague many providers of home-based care in rural areas.
Among those is the heavily regulated home health industry generates a large amount of billing, certification and payment processing work that can be a “huge lift for rural communities,” Fanning said.
Rural providers must also traverse long distances between patients’ homes but are not reimbursed by Medicare or Medicaid for the time they spend traveling. A provider in metropolitan Denver could visit several patients in quick succession. In Grand County, they may drive 100 miles round trip to get from a home in Winter Park to Gore Range, Fanning said.
“What (Medicaid and Medicare) pay for the visit is barely enough to cover the costs of the professional, let alone the cost of the travel and the admin,” she said. “For rural communities, it’s not a profitable business.”
Finding staff is among the steepest barriers.
Often women of color, home health workers take on physically and emotionally taxing work that requires specific credentials but sometimes pays little more than minimum wage. Even those who work multiple jobs might struggle to make rent in Colorado’s pricey mountain communities, some experts said.
Employee shortages have grown more dire during the pandemic, as some home health workers faced increased exposure to the virus, burnout and vaccine mandates, or could receive unemployment pay.
“It’s hard to recruit people into a field where you’re like, ‘I can go work at Amazon and make $20 an hour,’ versus this backbreaking work where you probably don’t have a lot of benefits,” said Esposito, with the Colorado Health Institute.
She described a “push and pull” between the need to raise worker wages and the cost of home health care for older adults. It can cost an annual $50,000 to $60,000 to hire a home health aide, compared to about $100,000 for a nursing home, she said.
“If you just don’t have that money put away… it just drains your retirement funds,” Esposito said.
Stephanie Einfeld, chief executive officer of Northwest Colorado Health — the home health and hospice provider that left Grand County last fall — said the organization departed due to a shortage of workers. For a time, the nonprofit relied on employees driving over from nearby counties but decided to pull the plug before winter 2020. They were concerned poor weather could make commuting more dangerous and time-consuming for staff, and put patients too far away from their health care providers.
Grand County faces unique difficulties in recruiting health care workers because prospective employees often commute to the Front Range, where they can earn higher wages, Einfeld said.
State and federal payment programs also don’t compensate staffing agencies for the full cost of providing care, forcing them to rely on foundations, grants or other benefactors, Einfeld said.
She thinks “drastic changes to the payment model” are needed.
A five-county survey sponsored by Northwest Colorado Health found about 28% of Grand County’s residents were age 60 and older as of 2019, and 57% of older adults in Grand, Jackson, Moffat, Rio Blanco and Routt counties were living alone. Fifteen percent of Colorado residents are age 65 and over.
Erin Fisher, director of Vintage, a northwest Colorado aging agency, said home-based care has long been undervalued because there’s an “antiquated idea” that family members will provide it.
But family members often live scattered in different towns or states. Parents have fewer children than in past decades. People live longer.
Family members that do provide that care may struggle financially, especially if their employers have inflexible caregiving policies.
Residents have called Fisher’s organization in “crisis mode” because they or a loved one were recently discharged from a hospital or skilled nursing facility and still need help caring for a wound or other malady. Sometimes, they require nonmedical care, like help bathing, dressing or doing laundry.
There’s a shortage of providers in the five counties Fisher serves, including Grand County, she said.
Elizabeth Kosar, a spokeswoman for Gov. Jared Polis’ office, said in an email that there are a few licensed agencies that provide out-of-hospital services in residents’ homes to “fill gaps” in some counties “due to barriers to access (rural, resources, etc.).” She also provided a link to a database of health care facilities in Colorado.
Just under half the state’s counties don’t have a home health or hospice provider based there, according to the database. Residents in some counties receive care from hospice or home health agencies in neighboring counties.
Namaste, the new home health and hospice provider in Grand County, is still looking for staff.
Workers from Namaste’s other locations in Colorado have been driving over to help. The chaplain comes from Aurora. The lead social worker comes from the Front Range.
For a time, Namaste had one nurse serving the 1,870 square mile county. They now have five nurses working there.
One Wednesday in October, medical social worker Van Valkenburg came from Arvada to visit Hawkins’ assisted living facility, accompanied by a service dog named Henry Butters.
“How are you feeling physically today?” Van Valkenburg asked, after the 4-year-old corgi rushed over to lick Hawkins.
“I’m feeling pretty good except I’ve got some pain in my leg,” she responded.
A few weeks earlier, she had felt despondent, like she was “gone, going.”
But her sister had come to visit her and she now felt like she still had “lots of kick.”
“We love that,” Van Valkenburg said. A crocheted blanket from Van Valkenburg’s mom laid across Hawkins’ bed.
Hawkins, who spent 23 years working for the postal service before retiring, sees several benefits to home hospice. She receives companionship, visits from a chaplain, nurse, certified nursing assistant and social worker, and she can stay in the room where she’s lived for years.
She’s close with the residents of the assisted living facility and its staff, one of whom helped her apply makeup and recently painted her nails a vivid shade of pink. (The staff member, a certified nursing assistant, also works for Namaste.)
Her adult children visit her on the weekends. She’s grateful to know Namaste will provide 13-months of bereavement support to her three adult children after she passes away.
“We’re so lucky,” she said.
Namaste also brought medical equipment, including a hospital bed, bedside table and oxygen.
In the months before Namaste arrived, residents of the assisted living facility were transferred to a hospital or skilled nursing facility in Denver — some 100 miles away — if they needed hospice services.
Don Knox, a Grand County resident and executive director of the Home Care and Hospice Association of Colorado, said he didn’t know of another county that had lost all of its providers. He cited other issues that bar access to home-based care, like prospective patients being placed on waiting lists or only being able to receive services on certain days.
Officials in the industry and in government need to help find people who see the value in pursuing a healthcare career, provide more training, and increase funding so that “agencies can pay a livable wage,” he said. Colorado’s Joint Budget Committee recently approved a $15-an-hour minimum wage for direct care workers funded with state dollars.
“I often think that if I’m ever homebound, how would I care for myself in Grand County?” he said.
“We have our work cut out for us.”