From the onset, I had a specific idea of the care plan that would be necessary for Katie to be cared for at home. But, I was skeptical that such a plan would be approved.
The plan was based on two major factors:
- The opportunity to use an existing handicapped-accessible living area:
First of all, Katie has an ideal living situation in her home. A number of years ago, Sam’s mother chose to utilize her finances to add a handicapped-accessible living area onto Sam and Katie’s house. They built a large living area with a handicapped bathroom that extended off of the existing first-floor family room so they could provide the assistance needed.
- The ability to get approval for consistent 24/7 care:
Secondly, Katie requires total care, which Sam would not be able to handle alone. He works part time and needs the freedom to come and go without having to constantly make arrangements. Although Sam and Katie have two sons, only one is local, and both have the responsibility of young children. Katie needs one consistent fulltime caregiver, in addition to Sam, living in the home.
At the October 23rd meeting, Katie was relatively alert and able to participate in a limited way. Sam informed the provider that all narcotic medication had been discontinued. The provider assured Sam that they would be able to care for Katie in the home environment. More importantly, another meeting was scheduled for the following week with all involved parties: Katie and Sam, the Area Agency on Aging care manager, the nursing home social worker, the provider, and the prospective caregiver.
At this meeting, Judene and I were also in attendance to provide support for Katie and Sam. When we first arrived, Katie greeted us with a vivacious, “Hi!” We were delighted.
When the Aging care manager outlined the specifics of the Waiver Program’s, “Services My Way” plan, I was floored. It provided more than I had dreamed of in my wildest imagination, such as:
- A 24/7 Service Provider
- Equipment: electric Hoyer lift, customized wheelchair, shower wheelchair / commode chair combo;
- Environmental modifications: ramps, laminate flooring, wheel-in shower modification; and
- Transportation: two roundtrip EMS transportation services monthly for medical appointments.
And if this was not enough to make the day, the provider brought the caregiver they had in mind to look after Katie. “Gloria” has experience working in a family unit. She knows how to use a Hoyer lift. She’s described as being a homebody, having spirit, and being reserved yet warm. We were all most-impressed when Gloria reassured Katie with a gentle touch and calmed her with an uplifting hymn.
One more meeting was scheduled to complete the Public Partnership paperwork for final approval of the plan. The paperwork has now been submitted. The target date for Katie to come home is December 15th. And again, we wait…
Katie and I were born in the same year—1948. The thought of having to spend life in a nursing home, potentially for decades, makes me cringe. Especially for someone like Katie who is vivacious to the point of hyperactivity. She is selfless—always helping others. She has raised a foster child. She has done mission work in Peru and on reservations in the Western United States. She has helped friends and neighbors with cancer. She was a caregiver for her mother and mother-in-law. She provided support to David and me when we were caregivers for my mother-in-law. It’s time to give back.
Because of my professional background, I knew that Katie would qualify for a waiver program. I was familiar with a company that provides a consistent live-in caregiver 24/7 at a cost, that although expensive, is about 25% of what most companies charge. But there were two major challenges.
The first was to convince Sam (Katie’s husband) to have two assessments for services—from the potential provider and from the Area Agency on Aging. But, Sam said, “I just can’t see it.” After many months, I finally resorted to telling Sam I just could not continue to visit Katie so often at the nursing home—it was too difficult seeing her living in that environment while he was resistant to exploring all potential options. I told Katie I had done all that I could do—it was up to her to persuade Sam.
The second challenge was that waivers do not generally provide 24-hour care. The plan hinged on convincing a bureaucratic institution to see the obvious: that it makes sense to provide 24-hour care when the cost is equitable to the 10-hours of care from “approved” providers (as well as cheaper than a nursing home).
I’m unsure of the motivating factor, but in May 2014, Sam decided to move ahead with the assessments. He called the Area Agency on Aging to request an assessment. I called the 24-hour provider, who was available to assess Katie the following week. I then e-mailed the social services director at Aging, who was able to facilitate the agency process. Everything fell into place. The 24-hour provider prepared a care plan that was then ready to present at the agency assessment.
We were informed of a new program called “Services My Way,” which was exactly what was needed to be able to care for Katie successfully in her home. However, the program had not yet been administered in this county. So the assessments were complete—the care plan completed and submitted. It was now time to wait…….