Medical research — it’s not what it used to be

A pipette dropping sample into a test tube,abstract science backJustine Dyer could be the poster-woman for 21st century medical research on people with intellectual disabilities. Justine is 26 years old, has Down Syndrome, lives in a house with two roommates and has a job.

She is also undergoing screening for a trial for a drug that could help improve her memory and language skills.

To be a part of the drug trial, Justine has to give what is known as “informed consent,” and that’s a tough requirement for anyone with cognitive disabilities.  Historically, researchers and doctors have provided subjects with lengthy and complicated consent forms, making it difficult if not impossible for people like Justine to understand what they are signing up for.

Typically, they relied on a parent or guardian to make the decision for them and that was problematic. Ethical scientists want their subjects to fully understand all potential consequences of being in a drug trial.

Informed consent simplified

Researchers think they may have found a way to help trial participants better understand. Using pictures, cartoons and simplified language, doctors and scientists have created consent documents custom-made for people with intellectual disabilities.

I love what Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital, says about the efforts underway.

“This is an era of participatory research,” he says. “We do not want to do research on people with Down Syndrome. We want to do research with people with Down Syndrome.”

This mindset and the commitment to working with individuals who have an understanding of what they are agreeing to is a far cry from the days when medical research was conducted at residential institutions for people with intellectual disabilities.

What happened at Willowbrook

The most famous of these research efforts occurred at Willowbrook State School on Staten Island, New York, in the 1950s. The lead scientist Dr. Saul Krugman has been almost universally condemned for his studies of hepatitis at the state school, home to thousands of children with intellectual disabilities.

After receiving consent from the parents of participating children, Krugman had the youngsters injected with a mild form of hepatitis. He was testing a theory that the body can build up its own antibodies to hepatitis in the same way that it does to polio.

Krugman’s study was far more complex than is described here, but it is fair to point out that he had been brought to Willowbrook to come up with ways to halt the spread of hepatitis at the school.  As a result of his work the incidence of hepatitis at Willowbrook was reduced by 85 percent.

Nevertheless, a positive outcome does not excuse unethical research.  There are plenty of arguments both for and against what Krugman did. And the result of the controversy and the difficulties with informed consent has been a reluctance by scientists to conduct studies that would benefit this population.

It’s a sign of the times and the progress that’s been made that people like Justine can fully participate in beneficial studies that help individuals like her. And it’s long overdue.

Disability newsbits

Deja vu revisited

Every once in awhile, public discourse focuses on the pros and cons of euthanasia. The issue is in the headlines in Belgium right now because that country’s Senate has voted to allow euthanasia for terminally ill children.

As the New York Times points out, euthanasia for children has been taboo in most countries ever since Nazi Germany put to death thousands of mentally and physically handicapped children during what was known as Kinder Euthanasie.

The Germans weren’t the only people who believed that so-called “defective” children should be eliminated. There was a strong eugenics movement in the United States 100 years ago and one of its results was that many states passed sterilization laws. These laws were designed to ensure that people with disabilities, those who were poor and others who lived on the edges of life could not reproduce.

There were also news stories about doctors who refused to treat newborns who had deformities. In one such case, a doctor in Chicago allowed a baby boy to die because his head was fused to his shoulder and he was born with a closed intestine. The child’s parents agreed with the doctor’s decision.

A hundred years later, we’re still debating the issue in some form or fashion.

Healthy lifestyles for people with disabilities

This is the final week for Paralympics in Sochi, and many people many not be clear on who these sporting events are for. The Paralympics are for individuals with physical disabilities. Competitors do not have intellectual handicaps, as do those who participate in the Special Olympics – a completely separate set of games.

As the Montreal Gazette points out, even though Special Olympics has been around for many decades, its focus has not necessarily been on healthy lifestyles for people with intellectual disabilities. These individuals often take more medications than people in the general population, yet they are not as likely to get routine exams for eyes, teeth and ears.

“Sport, health and healthy lifestyles can become powerful vectors in promoting the inclusion and social participation of people with an intellectual disability,” wrote Diane Morin, holder of the Chair of Intellectual Disabilities and Behavioural Disorders at the Université du Québec á`Montréal.

For that reason, it’s good to read that Special Olympics Quebec is offering special health clinics for athletes.

A teaching hotel

You’ve heard of teaching hospitals. How about a teaching hotel? My hat’s off to Marriott Hotels for its plans to build a hotel in Muncie, Indiana, staffed in part by people with disabilities.

The hotel will double as a training facility for individuals who want to go into the hospitality and food service industries. At the same time, it will provide training for human resource professionals in how to hire more employees with disabilities.

The idea for the hotel came from a dad who was frustrated at the lack of postsecondary opportunities for his son, who has Down Syndrome.

I hope to read more stories like this in the future as people with disabilities become more a part of our everyday lives. Read more about what the Brookwood Communities in Houston and Georgetown are doing to provide postsecondary work opportunities for people with intellectual disabilities on my previous blog post.

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 moment I dreaded is here

In the past few months, I’ve had to find a place for my aging mother to live where she can be safe and have her needs bigstock-nursing homemet. In other words, I’ve been most concerned about getting her the basic necessities – decent food, a clean atmosphere, prompt attention to her medical needs — not finding her a place where she can really live.

I never wanted to get to this moment.

I had hoped and prayed that Mom would be able to live out her days in the independent living community she moved to several years ago. It was clean, smelled good, was nicely decorated and the food bordered on excellent. She had a group of friends she ate with at every meal and felt at home in her one-bedroom apartment.

Game changing events

But that life came to a halt after a series of falls, two broken bones and two surgeries. It was more than she could bounce back from. Later this week, she’ll have to move to the nursing home wing of the rehab hospital she’s been in since late October.

I dread this eventuality. I’m sure Mom dreads it, too, more than I. It just seems to me that we ought to do better for our aging folks than to sentence them to nursing homes.

Who in their right mind thinks it’s humane to cram two people into one room and provide them with a curtain for so-called privacy? In what universe is it okay to prop people in wheelchairs and leave them, heads hanging, in front of a television set?

Even the best is unacceptable

The nursing home Mom is going to is considered one of the best in town. But I don’t want her living there. The terrible thing is, I don’t have a choice.

Mom can’t walk anymore and she has almost no strength, so she needs help transferring from bed to wheelchair. I can’t even get her in and out of my car without the help of two other people.

My distress is shared by thousands of other folks. On a recent Linked-In discussion group, the topic was whether young people with disabilities should live in long term care facilities, AKA nursing homes. One respondent from Brazil said in her country, it is not culturally acceptable to place family members in such settings.

She also remarked that family members can bring about change for their loved ones by being strong advocates. And finally, she said, the laws need to be updated to accommodate the growing aging population.

I agree with her 100 percent. But I also think in this country we need social and cultural change. Putting people away – whether they are aging or merely disabled – needs to become a thing of the past.

Blind like me

Hand-And-ShadesIn 1961, journalist John Howard Griffin published Black Like Me, an account of his experiences as a black man in the Deep South. What made the book unusual was that Griffin was actually white, but with the help of a dermatologist, he was able to darken his skin and pass as a black man.

Not surprisingly, he encountered the same intolerance and hatred that all black people endured in the Deep South in the 1950s. It was such a powerful book that it was made into a movie by the same name and starred James Whitmore.

What brings this book to mind is the fact that for the past three weeks, I have – like Griffin – entered a foreign reality. I didn’t change my skin color. Instead, I found out in some small degree what it is like to have a disability.

A sucker punch

A few weeks ago, my right eye spontaneously hemorrhaged and I was rendered blind in that eye. Ten days later, I suffered a detached retina in the left eye. The result of these events was that I could not see well enough to drive, read or do much of anything.

For three weeks, I was basically shut down because of my inability to see. I had to rely on friends to drive me to doctor appointments, to buy groceries for me and even to visit my aging mother, who is in a rehab hospital.

It was a terrifying experience. I felt helpless, dependent and vulnerable. I felt shut away from the world and was frightened that my eyesight was permanently compromised.

Unlike people who live with disabilities day in and day out, I knew there was hope for me to recover. And for the most part, I have. A surgeon restored my eyesight in both eyes and gave me a black eye as a souvenir from the surgery.

Like Griffin, I found out for a brief period what it was like to walk in the shoes of someone who has many more obstacles to overcome than I do. (As an aside, for several years, Griffin was blind from an accident while serving in the Army Air Corps during World War II. He eventually recovered his eyesight.)

The pain of limitation

I realize that many in the disability community will look with disdain at my meager experience with disability. They might even call me to task for comparing my three weeks of near-blindness to anything that a permanently disabled person might endure.

And they will have a point. I don’t claim to understand fully what it’s like to be legally blind. I only got a taste of it and found out that disability is limiting, painful and lonely.

I’m guessing that many people go through periods in which they can identify with people who have disabilities. Surgeries, strokes, and other afflictions can cause temporary or even permanent physical and mental limitations.

I’m wondering if anyone reading this blog has had a similar experience and what you learned from it. Please let me hear from you if you did.