Are we missing something?

It happened again last week. Leaders of a social services agency were hauled before a legislative committee to Silhouette of helping hand between two climberexplain why vulnerable people under their care were injured or died.

This time, the leaders represented Child Protective Services (CPS), the Texas agency responsible for the protection of children in foster care.

It happened 20 years ago when I was spokesperson for what was then known as the Texas Department of Mental Health and Mental Retardation. The heads of my agency would be subpoenaed to testify at the state capitol about cases of abuse, neglect and death at state institutions.

Lawmakers always expressed outrage. The agency leaders always expressed regret and promised to do better.

History repeats itself — everywhere

This kind of historical repetition is not unique to Texas. It happens all over the country.

In the 1960s, the late Sen. Robert Kennedy toured Willowbrook State School on Staten Island, New York, and was appalled at the conditions he found. He told reporters afterward that people treat their pets better than the mentally disabled children were being treated at Willowbrook.

There was a huge public outcry, but nothing changed at the school. A few years later, television reporter Geraldo Rivera took a camera inside Willowbrook and captured on film the abusive and neglectful conditions.

There was another public outcry and legislative investigations. Money was appropriated and agency leaders promised to do better.

It seems to go in cycles. Every few years, there are news reports of vulnerable people – living under the supposed watchful eye of a tax-supported agency – who have been killed or badly hurt.

 We’ve heard all this before

This week, the leaders of CPS said they were taking aggressive steps to protect foster kids. Foster parents are being more closely scrutinized. Foster children are being visited more often. Training of case workers has been ramped up so they can better spot abuse. Technology is being upgraded and abuse prevention programs are being launched.

One senator said he had heard all these kinds of promises before. He wondered what is different this time. Another senator remarked that they must be missing something.

Both senators are right. They’ve heard all this before. And they are missing something.

What they are missing – what we all are missing – is that these outrageous situations will continue to occur as long as we underfund social services.

And even then, even if we provide adequate funding, the deaths and injuries will not end. We can only get close to that goal when each of us assumes responsibility for all of our vulnerable citizens – including children, people with disabilities and the elderly.

Making a more decent society

I like what my colleague J. David Smith, professor emeritus at the University of North Carolina at Greensboro, says about this issue.

Dr. Smith, who has written extensively about the treatment of people with disabilities, says we don’t have to all become social workers or in some way devote our lives to caring for these folks. We don’t have to all be like the Good Samaritan in the Bible, who risked his life and social standing to help someone others had shunned.

“We need more acutely, however, the day-to-day caring of the Minimal Decent Samaritans,” he wrote in his excellent book Ignored, Shunned and Invisible: How the Label “Retarded” has Denied Freedom and Dignity to Millions.

“It is that quality in ourselves and others that makes for a more decent society.”

To that, I say a hearty amen.

The future of institutional care

Dr. David Braddock

Dr. David Braddock is executive director of the Coleman Institute for Cognitive Disabilities at the University of Colorado. He has been a valuable resource for me in my research and writing about intellectual disabilities. I contacted him after the Austin American-Statesman published a story about disturbing levels of abuse and neglect at the state’s 13 living centers for people with intellectual disabilities.

Dr. Braddock has been in the field of developmental disabilities for 40 years and he started his career at Austin State School, where my uncle lived for two decades (long before Dr. Braddock).

I asked him about why abuse and neglect is still a serious problem in institutions and what the future holds for institutional settings.

Is it possible to eradicate abuse and neglect from institutional settings or are they endemic to such facilities?

It’s possible to reduce abuse and neglect. They are inherently difficult environments to police in such a way that you could eliminate all abuse and neglect. You have to make really good decisions in who you hire to spend moment- to moment, day- to- day time. Pay is very low. It takes a great deal of patience and some special training to work with people with developmental disabilities in an institutional  setting. It’s an unnatural environment to begin with. A lot of time people with disabilities have co-occurring disabilities. They can exhibit less than fully rational behavior.

So we’re really looking for very special, almost gifted people to be the best types of folks to work in institutions and we tend to hire people who aren’t necessarily ideally suited for such environments. We shouldn’t be too surprised that many of them get frustrated and angry and act out against the residents.

How many states have closed all their institutions?

About 13 or 14. Over the past few decades, 161 institutions have closed — roughly half of the total number of institutions that existed at the peak.

Do you fore see a day in 21st century when all will be closed?

Yes.

How long will it take?

One could just project the trend over the last 25 years and identify the average statistical character of that trend and if you project it out at the same rate that it’s been occurring over the last 20 or 30 years, you might identify sometime 20-25 years into the future.

However, there is every possibility that the trend may accelerate. There may be some action taken federally that for example decides that we’re not going to reimburse payments to states for providing institutional support at the same rate as we are doing in the community and family homes. And so a change to the fiscal structure for federal support to the institutions could have a fairly rapid and scathing effect on the maintenance of state institutions by making them much more expensive for states themselves to operate.  I think it’s not unlikely that an event like that will occur in the next 5-10 years because of the costs of operating these facilities.

Has support from parents, chambers of commerce and other groups dwindled in last 20 years for the continuation of institutions?

There are still powerful forces behind  sustaining institutions. But we now have quite a number of states that you might characterize as being institution-free in developmental disabilities and they’re operating and have been in some cases more than a decade or two. So the trend line is not slowing down. We’re still seeing significant numbers of institutional closures every year from many states across the country and the hard part is getting to the point where it can be demonstrated that the state did not have to have a state-operated institution to operate a service delivery system. We now have 15-20 states that are in that category and have been operating in that category, some of them, for 20-25 years.

We have a natural experiment going on. That’s probably the wrong word to use, but it’s been a social experiment to successfully operate service delivery systems fully in the community and the family. The direction is pretty clear and it’s pretty obvious that we’re headed toward a future in developmental disabilities where there is likely to be a more complete commitment to community services and family support.  In the next 20 to 30 years, it’s not unrealistic to envision that there would be no institutions in the vast majority of the states.

Once that occurs, political props will be removed from underneath the resource commitments that many of the states are now getting for operating institutions. Those states will be isolated and they too will ultimately break from the institutional model to the community and family model. I can’t tell you how long that will take. It’s happened about as quickly as the states have been able to tolerate it.

Texas still battles abuse at institutions

I was saddened, dismayed and even disgusted last Sunday when I read the main story on the front page of the Austin American-Statesman.  Abuse and neglect at institutions for people with intellectual disabilities is still a serious problem in Texas.

I say “still” because in the 1990s, I worked for the state agency that oversaw these institutions, and abuse and neglect was a big problem then. Twenty years later, Texas has drastically reduced the populations at its 13 institutions. But problems persist.

High number of caregivers fired

I was shocked to read that in 2009, 1100 employees out of a total workforce of 14,000 had been fired for abuse and neglect. The Department of Aging and Disability Services signed an agreement three years ago with the U.S. Justice Department to crack down on abusers. But mistreatment remains a serious issue.

As part of the agreement, the state has installed surveillance cameras in facilities. These cameras have been useful in confirming cases of abuse, but apparently they have not proven to be much of a deterrent.

Tragically, some residents pay the ultimate price for these conditions. A 28-year-old man living at the Richmond State Supported Living Center died in 2010 from blunt force trauma to his abdomen. Two employees were fired and later indicted in the case.  At the Brenham facility, a resident died after choking on a peanut butter sandwich while staffers played cards in another room.

Suitable workers hard to find

Dr. David Braddock, executive director of the Coleman Institute for Cognitive Disabilities at the University of Colorado says it takes very special, almost gifted people to work with residents of institutions. Because individuals with these qualifications are rare and the pay for these jobs is low, “we tend to hire people who aren’t necessarily suited to such environments. We shouldn’t be too surprised that many of them get frustrated and angry and act out against the residents.”

And so it all goes back to how much the state – and ultimately the public – is willing to devote to the care of society’s most vulnerable people.

The story that appeared in Sunday’s newspaper could have been written 20 years ago when I worked for the state. It could have been written 50 or 100 years ago almost anywhere in the country.  I am disheartened that so little has changed.