Recently, Peter Berns, Executive Director of The Arc of the United States, visited Spokane to discuss challenges facing people with intellectual and developmental disabilities (I/DD) and their families across the nation. Peter noted that among the 50 states, Washington ranks 41st in its per capital investment in community-based services for people with I/DD. Forty-first. If this were a national test, like the ACT where a student’s ranking reflects his or her standing among peers, that number puts Washington in the 18th percentile for support for its most vulnerable citizens.
That number is even more disturbing when one considers what is being called the “Silver Tsunami”—a wave of Baby Boomers entering their 70s who have a son or daughter with I/DD at home. Many of these families have never applied for services for their son or daughter (like long-term living support) through the state’s Developmental Disabilities Administration (DDA). The reasons vary. Some never thought their child would outlive them. Others are confident that a sibling will step in when they are gone. Some just have not thought about it.
The truth is some 45,000 parents in Washington state are approaching the age where they will no longer be able to care for their adult son or daughter with I/DD—and have no plan in place when that day comes. If they die suddenly or get sick or injured, if a sibling isn’t able to undertake the care as planned, or whatever, those individuals will be forced to apply for state services just to keep a roof over their heads.
But if they have never bothered to connect to DDA, how will that happen? Engaging “the system” is a complex and often time-consuming process for which there are no guarantees. By waiting, parents might be setting their loved one up for a heart-wrenching crisis in which crucial decisions about how and where to live are made in haste—or worse, desperation.
The “Silver Tsunami” is a crisis of monumental proportions that Washington’s 18th percentile support system is in no way prepared to handle. That system is already overwhelmed—even now people struggle to find non-family housing for their loved one. Imagine 45,000 more people stepping forward in the next 10 years in desperate need of long-term living support. Tsunami is right.
What will those families do?
Other than homelessness, there is one option—institutionalization. For decades, lifelong institutionalization was the nation’s principal means for dealing with people with I/DD. As recently as the 1960s, parents who learned that their child had disability were advised to “give them up.” The state would house them, they were told. And they did—nearly 200,000 at the peak—in giant, hospital-like structures across the country. Unfortunately, these institutions were less a model for support than they were hideaways for people the world did not want to acknowledge. Severe overcrowding left inmates subject to neglect and often severe abuse. When Robert F. Kennedy visited Willowbrook State School, a state-run institution in upstate New York, in 1968 the appalling conditions there prompted a demand nationwide reform. (Search Willowbrook State School on YouTube to see for yourself why Kennedy called the place a “snake pit.”)
Recognizing a failure when it saw one, the federal government eventually endorsed community-based programs over mass, life-long institutionalization. Today, people with I/DD can live in a home in the community just like yours and mine with qualified staff to provide care. People have jobs, visit friends, and come and go as they choose. Not only has community living improved their quality of life, the cost to taxpayers is about half of that of lifelong institutionalization. For this reason, most states have closed their institutions for people with I/DD for good.
But not Washington. Our state’s four institutions, now known as “Residential Habilitation Centers” (RHC), still house about 800 people. Some vocal parents and members of the Service Employees International Union (SEIU) are working hard to keep these facilities open—in spite of hundreds of quality-of-care violations in recent years. In fact, some are calling for greater investment in these facilities. DDA’s 2019-21 draft budget calls for channeling $40 million from community-based services to the state’s RHCs. Forty million dollars.
For Washington parents who want their adult children to live as valued members of their communities this proposal should be alarming. Why? Because it means we’re moving backwards. It means we haven’t learned the single most important lesson of the past—that mass incarceration of people with I/DD invariably leads to the absolution of their rights to live how and where they want, to have choice in their daily routine, and simply to matter to the rest of the world.
For the 45,000 parents of the Silver Tsunami, this regression should be terrifying. They’ve spent their lives providing a safe and happy life for their son or daughter with I/DD. But when whey find that they cannot do it anymore—because of Washington’s lukewarm commitment to people with I/DD and because of the crisis this malfeasance will create—the only solution might be a big brick building on the outskirts of town, far from home, far from family, and far from the hearts of community. And that is the exact opposite of what they wanted for their loved one.
Maybe that will be okay. Maybe the faults inherent to lifelong institutionalization will not reappear and people will enjoy healthy, happy lives way out there. Maybe.
If we as parents are reassured by that maybe, then we should keep quiet. We should hope that someone else calls their state legislator to ask why Washington is investing $40 million into a model of care that is inherently defective. We should trust that someone else will send an e-mail calling for a more robust investment in community-based supports for people with I/DD. We should say, in a personal meeting with a legislator, that Washington’s 18th percentile for state investment is perfectly fine—even though we have the means and will to do better. We should ignore the fact that in the next 10 years a crisis of unprecedented proportions will descend upon our support systems for people with I/DD. And—most importantly—we should pretend with all our hearts that the most likely solution to that crisis will not be a wholesale reanimation of the nightmares of our past.
For those of us who are not reassured by that maybe, Washington’s legislative session begins January 14. You know what to do.