The crisis in caring is becoming a catastrophe

A crisis ignored eventually leads to catastrophe, and that’s what we’re witnessing.

The word crisis was used in 1990 — 33 years ago — by the Bipartisan Commission of the United States Congress to describe the challenges the nation faced in providing long-term care services to people with disabilities and older citizens.

The commission also used phrases like an “urgent need for action” and “current conditions that are unconscionable” to alert Congress and urge action on recommendations that would ensure all Americans have access to high-quality, affordable long-term care services in the setting they prefer.

The commission said that while the problems were major, they would worsen in the future due to a rapidly aging society that would live longer lives enabled by breakthroughs in medicine and technology.

The commission challenged Congress and the president with its final words: “We must act now.”

What has happened in the 33 years since the call for urgent action? Shockingly and frustratingly, not much.

Presidents, governors and legislators have been unwilling to take bold action. Instead, they have chosen to convene more commissions, committees, task forces, and blue-ribbon panels — all of which produced similarly startling reports that ended with the same urgent call to act.

The lack of action has allowed things to only get worse. A recent report, The National Imperative to Improve Nursing Home Quality: Honoring Our Commitment to Residents, Families and Staff,  refers to nursing home care as “ineffective, inefficient, fragmented and unsustainable.” Pulling no punches, the report says that nursing home operators, owners, regulators and federal and state government payers are failing residents.

Further evidence abounds in the reporting of Clark Kauffman at the Iowa Capital Dispatch.   On a regular basis, Mr. Kauffman reviews reports of nursing home and home-care agency inspections. The inspections in the past two years have found disturbing — and, in some cases, horrendous — deficiencies in care resulting in neglect, abuse and even the death of Iowans.

Des Moines Register reporter Michaela Ramm provided more evidence in her April 23^rd article, Why Iowa nursing homes are closing — and why more closures are coming, which detailed the closing of 21 Iowa nursing homes since January of 2022.

The key questions asked in 1990 remain in 2023: How will we serve and support aging Iowans and Iowans with disabilities and give them the respect and quality of care they deserve? Will we serve people where they prefer – in their own homes and communities, or will we serve them in large institutional settings that take away their identities and their dignity?  What will be done to ensure the presence of a high-quality and stable workforce? Who will pay and how much for the services needed?

We’ve been in the long-term care policy arena for over 15 years. We’ve seen the perpetual paralysis of elected officials, and the power of trade associations and lobbyists who fight tooth and nail to preserve the status quo.

The time for “business as usual” is over.

Small but significant rays of hope are on the horizon. President Biden has proposed a number of actions to improve nursing homes and home-care services. His proposals, if implemented, will be a big first step.

At the state level, top leaders are in place at the Iowa Department of Health and Human Services and the Office of the Long-Term Care Ombudsman who are smart, passionate and understand the need for change. And a new leader of the Division of Aging and Disability, who can also be a difference-maker, will be named soon.

It’s time to take bold actions that provide all Iowans – all, not some – with access to the high quality, affordable services they deserve. Thirty-three years of dilly-dallying have caused unnecessary suffering far too long for way too many.

The crisis is becoming a catastrophe. Lawmakers serving Iowans need to step up and do what we elect them to do: lead.

If they won’t, they are complicit in the unfolding tragedy. And the message will be clear: The lives of vulnerable older Iowans and Iowans with disabilities just don’t matter.

John and Terri Hale own The Hale Group, an Ankeny-based advocacy firm working for better lives for all Iowans. Contact them at [email protected]