Archives for September 2012

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.

Making Best Buddies

Nicole Sonnier
Best Buddies

After writing in my last post about Best Buddies, I asked Nicole Sonnier, Texas state director, to tell us more about this wonderful organization.

What is the purpose of Best Buddies?

Our mission is to provide long-lasting relationships between people who have intellectual disabilities and those who do not.

How did Best Buddies get started?

The organization was started by Anthony Kennedy Shriver, son of Eunice Kennedy Shriver, who founded the Special Olympics. The Kennedys, of course, have a long history of working with people who have intellectual disabilities. Anthony grew up being very involved in Special Olympics and he observed the special friendships that occurred during the games. He thought about the impact of year-round friendships and how they would make a difference in the lives of people with intellectual and developmental disabilities.

When he was a student in college at Georgetown he got a bunch of his friends together and they went and visited institutions. He told his friends he was sure they had a lot in common with the residents of those institutions. They took the residents out to movies and baseball games. They made actual true friendships. A lot of those friendships are still in existence today. After college, Anthony went nationwide to other colleges and high schools and started Best Buddies chapters and today, there are more than 1500 Best Buddy chapters across the United States and we’ve expanded to 18 countries.

How does Best Buddies work?

The Buddies are the students who have the intellectual disabilities. Typical students are called Peer Buddies. We match them according to their interests. We have a match party every year at the beginning of the school year. There are officers for that chapter and they talk about what the chapter is going to do as a group and they talk about what the requirements are for members. They must have an activity together one- to-one at least once a week – that can be sitting together at lunch or going to the movies and they have to spend time with their Buddy even outside the school. We want it to be something that’s long-term.

Can you talk about inclusion and how important that is to the Best Buddies mission?

Our mission is of course inclusion. We have found that in so many schools now we actually see the kids in the special ed classes in a separate wing. The special ed kids come in through a separate door and the other kids never see them. And so now, because of Best Buddies, those kids are no longer kept isolated. They are actually out in the commons area and they are mingling with their Peer Buddies in the lunchroom and at school dances. It’s really been great for the typical students to see the abilities of the students that are special ed students. And it’s great for the special ed students so they can have friendships with people other than their caregivers and parents and teachers.

The ultimate goal of Best Buddies is total inclusion – social inclusion and educational inclusion. To expose the public to individuals, children and adults, to expose them to the world so people can stop seeing them as individuals with disabilities and see them as people who have a lot to contribute.

Out of this kind of inclusion, we’re hoping many of our students will become long-term advocates. When those students grow up, they might grow up to form a company that hires people with intellectual disabilities.

The Kennedy legacy

When most people think about the Kennedy dynasty, they think of politics and power and wealth. How could you think otherwise when three of the Kennedy brothers became U.S. senators and one became president?  One might also think of tragedy and heartbreak – with the assassinations of John and Robert and the deaths of Joe Jr. on the World War II battlefield and Kathleen in a plane crash.

Of course, when I think of the Kennedy legacy, I think of all these things. But I also reflect on all the family has done to advance the standing of people with intellectual disabilities. As is so often the case among people who take up causes, the Kennedys had personal experience with disabilities. John’s oldest sister Rosemary had a disability of some kind – the family always said it was an intellectual limitation. There is some debate about that diagnosis; nevertheless, Rosemary was the impetus for the family’s activism in the field of disabilities.

The Kennedys as activists

Rosemary’s younger sister Eunice prevailed upon John, when he became president, to establish the first President’s Committee on Mental Retardation. During his administration, he was the first president in history to welcome a person with an intellectual disability into the White House.

Later, Eunice and her husband Sargent Shriver founded the Special Olympics, providing athletic competitions worldwide for people with intellectual disabilities. Today, millions of athletes participate in sporting events in 170 countries.

The Shrivers’ son Anthony Kennedy Shriver built on their legacy by founding and building Best Buddies, an organization dedicated to creating one-to-one relationships and employment opportunities for people with intellectual disabilities. It is a volunteer organization, pairing college and high school students and adults with peers.

Best Buddies recognizes that people with intellectual disabilities are often excluded from society. By creating meaningful friendships, Best Buddies seeks to change public perceptions and to help people with intellectual disabilities live richer, more meaningful lives.

My dad was a Best Buddy

As I’ve mentioned in previous posts, decades ago, long before the founding of Best Buddies, my dad filled a similar role for his younger brother. He tried to include his disabled brother in neighborhood baseball games and he protected him from tormenters. Later in life, I became my uncle’s Best Buddy, taking him out for hamburgers and for rides in the park.

As I’ve learned in writing about my uncle, people with intellectual disabilities want the same things as everyone else – love, belonging, and a sense of purpose. I’m grateful there are organizations like the ones the Kennedys founded to help people with special needs find a place in this world.

The sibling syndrome – revisited

After my last post about siblings of people with disabilities, my friend Rachel Simon (who wrote the very fine book Riding the Bus With my Sister) pointed out that there is an excellent organization that helps with sibling issues.

It’s called the Sibling Support Project, a nationwide support system for brothers and sisters of people with special health, developmental or mental health needs. The project trains service providers throughout the United States on how to implement the Sibshop program. This program helps siblings know they are not alone with their unique concerns.

Support for siblings of all ages

The project seeks to provide support not only to children but also to teens and adult siblings. An excellent video has been released about the sibling project. It features siblings of all ages talking about the joys and trials of having a family member with a disability.

I am so glad that our society is open enough to talk about such issues and to find ways to help families cope with disabilities. I only wish these services had been available when my Dad was growing up during the Depression.

His younger brother, my Uncle Melrose, had an intellectual disability and at the time, there were no services to help the family. My uncle couldn’t even go to school because there were no special education classes.

A childhood lost

As a result, my Dad — the oldest of five children — was called into service to take care of Melrose. My Uncle, who was nicknamed Pie, was anything but the saying “easy as pie.” He was often frustrated at his limitations and in response, he threw violent tantrums. He couldn’t dress himself and he needed help with almost everything. My Dad became his caretaker.

The situation robbed Dad of much of his childhood. I have often wondered how his life — and Uncle Melrose’s — would have been different if the world had been more open to them.

I’ve wondered what Pie might have learned if he had been able to go to school. And I’ve wondered if Dad could have been more emotionally open if he had been able to be around others who understood his situation.