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.

This is why we need journalists

106233_9376As a democracy, it is essential that we have newspapers, journalists and especially investigative reporters. How else are we going to hold our elected officials and governments accountable?

Besides, as York Times media critic David Carr has pointed out, if it weren’t for the Fourth Estate, what would the talking heads on Fox, MSNBC and talk radio have to yammer about?

But there’s another more compelling reason we need an independent and aggressive media. Our society depends on the reporting work of these watchdogs to dig out the bones and the skeletons that hide in our midst.

If it weren’t for their work, the general public wouldn’t know about Watergate or Iran-Contra or a host of other acts of skullduggery.  And we also wouldn’t know that 40 years after TV reporter Geraldo Rivera broke the news of scandalous conditions at the Willowbrook State School on Long Island, abusive  conditions still exist at state-run institutions in New York.

Must we have scandal to get reform?

Rivera’s shocking video footage of life inside the state institution for people with intellectual disabilities led to the eventual closure of the facility. At the time, New York Gov. Hugh Carey began a long overdue reform of the institutional system. And he appointed a commission and gave it strong authority to monitor the treatment of people living in institutions.

But that commission has since lost much of its power and its zeal for investigations. It tends now to play down allegations of abuse and its funding has been slashed to the point where it cannot be an effective overseer.

So now we have a situation where it’s hard to fire workers who abuse and neglect the vulnerable citizens who live in New York institutions. Worker unions have intervened in many cases and employees accused of such offenses as biting, hitting and leaving bleeding residents naked on the floor have been able to keep their jobs.

No finger-pointing allowed

New York is not unique on this front. The Austin American-Statesman’s Andrea Ball has reported faithfully on abusive conditions inside Texas institutions.

In Texas, at least, you can get fired for assaulting a resident at a state institution. Nevertheless, efforts to crack down on abuse have produced few results. Even the installation of surveillance cameras has done little to curb mistreatment.

As I mentioned in the beginning, stories like these remind us of why we need newspapers who hire investigative reporters.  They also remind us of why we need elected leaders who have the guts to insist on decency and humanity, even when they are opposed by powerful unions and other strong forces.

I’d hate to think the only way we can ensure civil rights for the disabled is for some terrible tragedy to occur in a state-run institution — or for someone like Geraldo Rivera to sneak a camera into a restricted area so the rest of us can see how disabled people are suffering .

At least the pay is good

Will the exploitation of people with disabilities never end? I’ll admit I’m naive. But I would hope that by the year 2013, people with mental or physical limitations would be regarded with more respect. The latest news indicates otherwise.

disney-world-magic-kingdom-10581086

It has come to light that so-called “guides” with special needs are being hired by wealthy families to escort them at Walt Disney World. Because the guides are disabled, they can move to the front of long lines for rides, allowing their client families to avoid waits up to two and a half hours.

The guides are hired through a special tour company, which charges $130 an hour for their services.  At the very least, I hope the guides are paid a good chunk of that amount, but I wouldn’t count on it.

This is nothing new

Of course, this scenario is nothing new. People with disabilities have been used by others for centuries. Only 100 years ago, William Henry Johnson, AKA Zip the Pinhead, was an attraction at a circus freak show in the New York region.

Zip had an odd-shaped head and was believed to have microcephaly, a condition in which the skull doesn’t grow large enough for the brain to fully develop. People with microcephaly often have intellectual disabilities; however, there was some doubt that Johnson had a low IQ.

Zip was displayed in a cage and billed as “the missing link.” It was the only way this impoverished, uneducated man could earn a living.

Free or cheap labor

Even before Zip made his debut, people with intellectual disabilities and mental illnesses were displayed for public entertainment in hospitals and in town squares.

In the 20th century, it was common for people with disabilities to be put to work doing labor at state-run institutions.  They worked without pay on the farming and dairy operations that fed those who lived in the facilities. And they worked in the laundry and food service sections.

In Iowa, a recent court case ended with $50,000 in damages being awarded to each of 32 men with intellectual disabilities. The men had worked in what were described as slave conditions in a turkey processing plant and paid 41 cents an hour. They lived in rodent-infested bunkhouses and were subjected to physical abuse.

Is diversity just a trendy thing?

For at least two decades, it has been in vogue to promote diversity. At universities, government agencies and private sector companies, the push is on to hire and promote a wide range of people. We teach our children to be accepting and tolerant of others, no matter how different they might be.

I like to think the campaign for diversity isn’t just for people of different racial, ethnic and religious backgrounds.  By all means, it should include those with disabilities.

From the latest news, it looks like we still have a long way to go in not only accepting, but embracing and honoring people who have physical and intellectual disabilities.

How I got on the bully pulpit

“I don’t think the worst thing that could happen to me is raising a child with special needs.  I think the worst thing is to raise a child who is cruel to those with special needs.”

Stop-Bullying smallThese are the words of a man named Joseph, who has a son with multiple health and disability challenges. Joseph writes on his blog Undiagnosed that his biggest fear is that one day his son Braxton will go to school and be the target of bullying by other kids.

I’m sure this same fear plagues all parents, but especially those who have kids with special needs.

Bullying is very common among young children. Experts say at least 10 percent of children are tormented by their peers.  I was one of the unlucky 10 percent when I was in elementary school, and I can still recall the sharp pain I felt at being mistreated by other kids.

Uncle Melrose got bullied

My Uncle Melrose, who had an intellectual disability, was bullied as a child. Other kids in his neighborhood taught him to say curse words and they physically challenged him. My dad, Melrose’s brother, defended him.

It is hard to describe the pain and shame a child feels after being bullied. I can’t begin to comprehend how a special needs child, who has fewer coping tools than I did as a youngster, can deal with this kind of abuse.

When it comes to children with disabilities, it occurs to me that their best allies against persecution are their parents, teachers and other advocates. Adults who have an understanding of and empathy for children with disabilities can model and teach respectful behavior.

Mainstreaming and inclusion are also beneficial. Children may be less likely to ridicule if they are familiar with and have an understanding of another’s frailties.

Children need more exposure to disabilities

This fact was brought home to me by a young father who heard me speak about my relationship with Uncle Melrose. I had delivered the same presentation several weeks before and this man and his 10-year-old son were in the audience for that earlier talk.

The father told me that the speech had a big impact on his son, who told his friends and relatives about it.  I don’t know this for sure, but I suspect this boy hadn’t been exposed to such a personal story about disabilities.

The father suggested I consider giving my presentation to groups of children and that idea intrigues me.  After all, my purpose in writing about Uncle Melrose was to let the world know what a great guy he was. Perhaps my talk can have an impact on youngsters who have had little to no exposure to the world of disabilities.

What do you think? If you have any ideas or suggestions on where I might talk about my friendship with my Uncle Melrose in front of children, I’d be interested in hearing them.

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.