Speaking out for People with
 Intellectual and Developmental Disabilities

Meet Jacob Beebe

By Ed and Virginia Carraway

JacobBeebeJacob is mentally handicapped, almost nonverbal, and must be attended to most of the time. He is overly friendly to all he meets, which poses some concerns. We hope to place him in a gated community of a State Center (ICF/MR) where he will be safe to wander and socialize daily and safely with many friends, as State Centers provide worship, community centers for residents and locals, swimming pools, basketball, baseball, special Olympics activities, art, animal and gardening therapies, on-site therapists, doctors, nurses, dentists and more.

Such a community would provide for his lifetime safety and daily activities, which are not now available to him in his group home. He loves basketball and will play for hours with others. Presently, however, he and his one roommate have very limited daily activities other than TV, music, an occasional trip to the mall or park. Mostly, he has a couch potato existence.

In Florida we recently obtained legislation to build private gated communities for those with disabilities, much like seniors, golfers and others have gated communities. Settings like this for people with disabilities, however, are objected to by publicly funded agencies like Florida's Agency for Persons with Disbabilities and federally funded Protection and Advocacy. The efforts by these well-funded organizations have made it virtually impossible to honor provide Jacob the option of an inclusive community, which we object to as violating our federal choice rights under Medicaid and Olmstead.

Meet Robert Zitzmann

By Carola Zitzmann

Robert is mentally retarded, with brain damage, austistic tendencies, and needs supervision most of the time. He is non-verbal, needs assistance in dressing/undressing, bathing, shaving, teeth brushing, toileting, as listed all his daily living needs. He lives in a privately-operated Intermediate Care Facility for Persons with Mental Retardation (ICF/MR). He lived with us at home until the age of 21 and has since lived at his present home, Trinity Missions Wide Horizons and is doing extremely well. We are so pleased with the program and services he receives. When he comes home with us, usually within two days, he does his sign to go back. There is just so much for him to do at his other home that he prefers to go back, which helps us realize we made a good choice.

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.