Don't we deserve better?
A recent Department of Justice investigation takes the state of South Dakota to task under the Americans with Disabilities Act for high utilization of nursing homes to serve people – old and young – living with disabilities. I found the story disturbing, but not for the reasons you might think.
This wasn't the news we have come to periodically expect when something sensational happens. What really hit me was that the places described did not sound like bad apples. As far as was evident, there was nothing egregious. In fact, one might say the picture painted by the DOJ is that of a pretty typical, garden-variety nursing home.
A few of the things DOJ identifies as supporting the contention that nursing homes are “segregated, institutional settings” are:
They are laid out like hospitals, with long hallways for residents' rooms around central nurses' stations and, in some cases, have locked doors or gates to prevent residents from leaving.
Staff wear uniforms and maintain separate office spaces that are off limits to residents.
Staff may typically enter rooms at any time after knocking on the door.
Medicaid-funded residents rarely have a private room or private bathroom, and are often assigned to rooms with a roommate whom they do not choose.
Residents rarely have access to a kitchen where they can prepare their own food and are rarely permitted to do their own laundry.
There are regimented bathing, meal, and medication times.
Some facilities do not permit residents to go outside or leave the grounds unaccompanied, or otherwise restrict where residents may go.
Few facilities allow residents to have pets.
If alcohol is permitted at all, residents who wish to drink alcohol are restricted to limited and doctor prescribed amounts and must go to a nurse to obtain it. Restrictions on these types of personal lifestyle choices are rarely based on medical needs.
Does any of this sound all too familiar? If you are anything like me your reaction is, “that doesn't sound like what I'd call home.” Especially that last part, where I need my doctor's approval and nurse's cooperation to get a glass of wine!
The DOJ's primary point is that many nursing home residents in South Dakota could be “spared” this existence if the state put appropriate resources into home and community-based alternatives. They state the "ADA is intended to insure that qualified individuals receive services in a manner consistent with basic human dignity rather than a manner which shunts them aside, hides, and ignores them." I certainly have no quarrel with that! But I feel the need to point out the emperor's lack of knickers, fearing the bigger picture questions this report raises may be lost.
The DOJ also notes that the ADA applies not only to people who are born with disabilities or acquire them earlier in life, but equally to older adults who acquire a disability through the aging process. That would include most, if not all, nursing home residents. That's an interesting wrinkle, given that they've just outlined myriad ways in which the typical nursing home falls short of the demands of the ADA.
But the DOJ never addresses that issue. In fact, a troubling conclusion can be drawn from what is not said. That is, for people who are unable to move out of the nursing home even if community supports were in place, that an institutionally structured and operated nursing home is the best we can do. To put it even more bluntly, the DOJ seems to be saying that as long as we get those people who can viably make a break for it out, the problem is solved. Meaning it is acceptable to treat those that remain in a manner they have through their arguments just defined as inconsistent with human dignity, “to shunt them aside, hide them and ignore them?” Is the goal really just to identify people that might be able to manage “on the outside” and accept the status quo for everyone else?
That left me deeply saddened - what a depressing goal! Should we not strive, as a society, to ensure that wherever people who have needs for support and care are living, it meets those basic expectations? Have we resigned ourselves to a belief that it's not possible?
There are people and organizations all over the nation creating living and care environments that clearly show that more is possible! The Eden Alternative, the Green House Project, the Household Model, the Coaching Approach, and a host of other non-branded varieties of person-directed living and organizational culture change have eliminated most, if not all, of the items on the DOJ's “problem list” about the nursing home. They demonstrate daily that it can be different.
As they have for almost 20 years now, an ever-growing group of such Pioneers will gather soon - this year in New Orleans – to share their approaches. They will teach and mentor those new to the game and struggling to figure out how to make it work. And perhaps just as importantly, they will soak up the inspiration and resolve to resist the societal resignation to the status quo – to persevere in Revolutionizing the Culture of Aging. We expect at least a thousand attendees – but why isn't it closer to 15,000?
I am reminded of Hubert Humphrey's statement, “The moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life, the sick, the needy and the handicapped.” I think he meant all of them. One day, likely each of us. I believe we all deserve better. You see that quote upon walking into the building occupied by the Department of Health and Human Services here in Washington, DC. Perhaps it should be engraved in the walls at DOJ as well, to serve as a reminder of a loftier goal we could aspire to?
Ruta Kadonoff is the executive director of the Pioneer Network.