Speaking out for People with
 Intellectual and Developmental Disabilities

Meet Phillip Miller

by Mary Paulsen

Phillip has severe autism and is virtually nonverbal. As an adult, he as Obessive-Compulsive Disorder and is still hyperactive. He is a large man and can be assaultive/dangerous when he does not get his way. I placed him at our "state institution" when he was five because of  my divorce and the death of my mother; I could not care for him. When he was twenty I chose to move him to a group home because I listened to the advocacy song of "normalization" and "opportunity."

His life has never been easy. There have always been unexplained injuries. In 2006, he was left alone in the kitchen when there was only one staff and that person had gone to attend to the other resident. Phillip's rugby shirt caught on fire at the gas stove and his back was severely burned ultimately requiring a skin graft. When he recovered, the State bureaucracy wanted me to send him back to the same home with the same staff, which was unacceptable. I requested that be placed at our Utah State Developmental Center, a public ICF/MR. Despite the State Director's orders to keep people like Phillip living in the "community," and after 15 years of saying "NO," a bill was passed to allow legal guardians CHOICE. Phillip is now happily living at the Utah State Developmental Center.

To read Phillip's full story, click here.

To read a related testimonial regarding the lack of support by Utah's P&A in response to Phillip's community-based injury, click here.

Meet Aaron Underwood

By Kevin and Rebecca Underwood

AaronUnderwoodPicOur son, Aaron, was born 8 weeks prematurely in December, 1979. While he survived the birth, the life long effects from subarchnoid and pulmonary hemorrhages are devastating. It was our intention to provide Aaron's care forever. However, his medical needs outpaced our ability as parents to meet the daily challenges presented. Physical, emotional, and mental exhaustion finally forced us to make what turned out to be the best choice for Aaron: Central Wisconsin Center (CWC), a state-operated ICF/MR.

We did not seek exctended care for Aaron at CWC because we didn't love him; we sought extended care at CWC because we did love him so much that we wanted to give him the best shot possible at a quality life. It was not simply the only choice - it was the best choice.

To read the Underwood's full story, click here.


Battling Chase's Demons

Source: The News Observer (April 4, 2010)

Seven years ago, Randi Davenport's son fell apart. Just as he turned 15, about the time most kids are learning to drive, Chase tried to strangle himself with a cord. He was convinced that people he called "the nailers" were coming to kill him. He went crazy.

In her new memoir, "The Boy Who Loved Tornadoes," Randi Davenport of Chapel Hill recounts her battle to save her son, Chase, as he descends into psychosis. Along the way, she delivers an indictment of mental health care in North Carolina and across the nation.

Davenport did not set out to write this book.

One day in 2004, she says, as she was "raging about mental health reform in North Carolina," a friend suggested that she submit an essay to a local newspaper. After a week of writing, she had 100 pages. "Then I started to cry, because I knew what it was. And I wondered if I had the strength and courage to go forward."

The result, "The Boy Who Loved Tornadoes" (Algonquin; $23.95), is a story of a mother's fierce love and a portrait of a system that fails some of its most mentally ill citizens.

One man and one Developmental Center saved Chase's life.

To read the article, click here.



Advancing Individual, Not Professional, Choice

My name is Rick Eastin.  I was born with cerebral palsy and as a result of my disability I attended special classes for persons with mental and physical disabilities from the age of 3 to 14.  My time at the school was, in many ways, a painful experience because my own disability impacts me in three different ways: physical, emotional and in my ability to learn.   Physically, I have a hard time walking and talking.  As a kid, I behaved in some very awkward social ways that caused my peers who were just physically disabled to ostracize me.  I had trouble with stress at times, overreacting in ways that aggravated rather than resolved the situation. I still have a very difficult time with things like spelling and punctuation. 

My academic and social skills improved about the time that I was ready for high school and I was mainstreamed for most of the day.  I became more independent when I learned to use public transportation and began to expand my social circle.  Eventually, I earned a BA in social work.  I have also learned from a number of friends including a Sunday school teacher and a ministry team. 

Since 1979 I have been involved, in various capacities, of working with adults with mental retardation.  Most of my involvement has been in the Christian community, however I have sought to study and understand both what has been done historically and what is being done currently to serve these persons in the human services sector.  One of my major concerns about where I see services going for people with mental retardation is that while there is much talk about giving them choices in reality we are ignoring what they really want. 

To read more and see Rick's full essay, click here.

Carsten’s journey to Sonoma Developmental Center

By Ana Mettler

About the author: Ms. Mettler is Carsten's mother. She tells the story of her son's long journey to Sonoma Developmental Center in Northern California. His journey involves a very successful "inclusive" educational experience to a sad saga of one failed group home placement after another, including several incarcerations. This long journey led Carsten to Sonoma, where it seems he is now on the road to happiness.

I have always been a fervent advocate of the concept of “Inclusion.”

When my son Carsten was middle school age I became very active towards having him included inCarstens_Story the same (very unique) school my other two children were attending. I felt that as a family it was important to share the same school experience.

It took a lot of convincing and sharing of information about the benefits of inclusion, but finally it became a reality. Carsten spent many fabulous years at this school, the “Open School.” He participated in trips to New Mexico and Mississippi, he took yoga classes, art classes, music, woodworking, cooking, etc. He apprenticed in the school cafeteria and then he worked in a city cafeteria, independently taking the public bus. 

In the year he was graduating, however, Carsten started to experience an increasing number of outbursts. Life with him at home became precarious and barely manageable for me.

"I Found You!"

By Emily McDonough


About the Author: Ms. McDonough is a volunteer at Fernald Developmental Center in Waltham, Massachusetts. She wrote about her experience as a Fernald volunteer in college application essay.

Hide-and-seek is a game in which the searcher’s goal is to find another individual hidden in an unknown location. This can be seen as a simple, but yet still challenging task. However, one should ask herself: “How much more challenging would the game be without knowing who or what one is seeking?” This is another version of ‘the game’— ‘the game’ of searching for one’s future calling. From my personal experience, I was not aware that my calling was hidden in my community service.

My service of volunteering at the Fernald Center in Waltham, Massachusetts, the oldest residential facility for the mentally retarded in the country, is what I consider to be the location which my calling chose as a ‘hiding spot’. After discovering this spot, the doors to my future opened.