Clair Porter isn't ready to give up on his wife, Charlotte, but caring for her has become challenging now that they're both 87.
Charlotte is on oxygen. She's had multiple heart surgeries. She has two titanium rods in her back and three fused discs. She's undergone surgery for breast cancer and for her gall bladder, and she struggles with Alzheimer's disease. She gets around still, but needs the help of a walker, a wheelchair or the electric three-wheeled scooter they own.
Still, Clair says he's making it. Charlotte doesn't want to go to a nursing home, and he doesn't want her to leave.
"I've had this lady for 62 years," he says. "I happen to love her. The good lord has given me three things to do. One, to take care of her. Two, to keep me on his side. And, if he doesn't do that, he's going to disappoint the devil as long as he can."
He laughs. But caring for Charlotte is no small task. In addition to his handling all of the household duties, from mowing the lawn to cleaning the floors to doing the grocery shopping, Charlotte needs help with small tasks. Putting on socks. Changing underwear.
While he gets some help from the couple's six children, they're busy with their own lives.
But now, thanks to a new law, Clair is getting some financial help. In 2014, House Bill 1357 was passed by the Colorado Legislature and signed by the governor. Its aim was to find better ways to "deliver home- and community-based services to the elderly, blind, and disabled, and to disabled children, and to persons with spinal cord injuries, that allows for more self direction in their care and a cost savings to the state."
Katey Castilla, home health administrator at the Independence Center, a local agency for people with disabilities, says one of the law's recent impacts allows caregiver spouses of people with disabilities to now get pay and benefits. Porter, for instance, is now paid for at least some of the hours he cares for his wife — services that might have otherwise been provided by a government-funded stay at a nursing home.
What's more, Porter can call the Independence Center to have a substitute caregiver fill in for him should he have an emergency or get sick.
Castilla explains that two Medicaid-funded home care programs are available for patients (or their representatives) to choose from. The old Consumer-Directed Attendant Support Services (CDASS) let the patient choose caregivers, including a spouse. The patient is given a certain amount of money — depending on needs — and can decide how much to pay each caregiver. But the caregivers don't receive any benefits like insurance or vacation time, and if they are absent for some reason, the patient must find someone to cover for them.
Before the law changed, spouses could only be paid through the CDASS program. But under the new law, patients can instead choose to pay their spouses through another program called In-Home Support Services (IHSS). IHSS is run through an agency like the Independence Center. Patients still can choose their own staff, which the agency vets and trains, or the agency can provide staff. Because they're employed by an agency, the patient's staff receive benefits like vacation time, sick time and insurance. And the agency provides 24-hour backup to primary caregivers.
Castilla says the Independence Center currently has about 185 clients on the IHSS program. A few have been greatly assisted by the change, including one mom who was caring for her disabled husband while also trying to hold down a job.
"For more people than not," Castilla says, "we hire family members — so people that already know the client, and were providing the care but just weren't getting reimbursed."