Expanding our home care team

After months of talking about it, we’re finally taking steps to bring on caregiving support at home. It’s difficult to even know where to start in sharing this next phase, but here we go!

Our initial plan is to hire someone independently, beginning as soon as September. In the coming week or two, we’ll be updating our GoFundMe page to reflect this next phase and also hope to take up several friends on offers of fundraising support so that we can set aside funds for the first three months of care as our first goal, and then a full year. More on that soon.

A necessary step

Folks who care deeply about us will undoubtedly have a lot of questions (and advice) about whether and how to proceed. Please know that we’ve done our research and this decision has been strongly endorsed by various people on José’s medical care team as a prudent move.

As the person who spends the most time navigating the bureaucratic side of José’s medical care, insurance coverage, and real-world constraints (there’s a colossal gap between what ‘should’ be, and how our health care systems work), I’ll try to address a few of them in this post.

For anyone reading this with a healthcare background, please read this as a lay person and don’t get hung-up on the terminology –there are terms I’ll use improperly or without the technical implications of someone using them as a medical service provider.

Won’t insurance cover this?

Despite the complications of José’s work status (namely that he still works and leaves home in his power wheelchair to do so), we’ve been successful in jumping through the hoops to secure home health services and have access to a wonderful team of skilled professionals.

Unfortunately, that service provider discontinued their home health aide line of service some time ago. This means that José would need to be discharged from their care and we’d need to start fresh with another service provider that offers all lines of service (e.g., physical therapy, occupational therapy, speech therapy, and home health aides, etc.). Why? Because insurance won’t allow home health services to be split between multiple providers. We’ve heard from numerous industry insiders that this is a common trend across the country. Meaning, few home health providers continue to offer the full array of services under one umbrella.

Furthermore, we’ve also achieved a notable win by invoking the Jimmo Settlement to get maintenance PT approved through our insurer, and changing providers could jeopardize (even if temporarily), that coverage. A short and imperfect explanation of this is that typically with skilled care like physical therapy, insurance will only continue to cover the care if the beneficiary shows potential for improvement.

To quote the Centers for Medicare & Medicaid Services:

In essence, the Jimmo Settlement Agreement clarifies Medicare’s longstanding policy that coverage of skilled nursing and skilled therapy services in the Skilled Nursing Facility (SNF), Home Health (HH), and Outpatient Therapy (OPT) settings does not turn on the presence or absence of a beneficiary’s potential for improvement, but rather on the beneficiary’s need for skilled care.

In José’s case (and other ALS patients), there is a need for skilled care to maintain function (e.g., range of motion) and to slow decline or deterioration.

Can’t friends and family help?

They already do – mostly through meal support, as lunch buddies, and gifting us various supplies from our Amazon wish list. A few family members have assisted with more intimate needs like bathing, changing, and toileting. The challenge is, we can’t just call someone up to run over for every toilet transfer (or other unscheduled needs) – and it’s no longer safe or feasible for me to do it alone.

As someone who built numerous large and skilled volunteer teams in my early professional career, I also understand the ‘cost’ of volunteers. The larger the support team, the more time and energy required to coordinate all of their efforts safely and effectively. Having a dedicated home health aide will actually free up some of my time to explore more ways for friends and family to get involved.

Why not use an agency?

Quite simply: staffing shortages. Given the current staffing challenges in this field, we have a better shot at forging a deeper, long-term relationship with a paid caregiver to whom we provide competitive wages and full-time hours, than to find ourselves without help or relying on a revolving door of new agency-sourced faces that will need continuous onboarding and guidance.

How you can help

Stay tuned for a future update in which we’ll announce our new GoFundMe stretch goal and some other fundraising efforts, and then help us spread the word!

In the meantime, here are three ways you can help:

1. Have time or fundraising experience and want to help us leverage a possible upcoming event? Send us a message; we’re hoping to pool a bit of time and talent from a few folks willing to help in this way.
2. Know someone who might be a candidate for our home health aide / caregiver support role? Encourage them to check out our listing on Care.com (we may add a listing on Craigslist next).
3. Simply say ‘hello’ and share an update with us as a comment on this post or via the contact page of this website. We don’t get out much and miss hearing from friends and family.

We’re hoping to have another exciting update to share by the end of this week (fingers crossed!).