Speaking out for People with
 Intellectual and Developmental Disabilities

Remembering Robin Sims

Robin_Color_150dpi     VOR has lost a dear friend and amazing advocate. On June 23, Robin Sims lost her battle with cancer. Robin had served as VOR’s President since 2008 until about a week before her death when her health required that she resign.  Her dedication to to our organization was so strong she even participated in VOR’s Annual Conference and Initiative in June. See here for VOR's Memorial Tribute to Robin.

     To honor Robin's memory and to sustain her advocacy legacy, please consider a memorial donation to VOR in her memory. 

          Her brother said it best: "This evening our lovely Robin passed away. Ever the fighter she gave every last breath to helping others! I am such a better person for having her as my sister and our kids are so much better off today having her as their advocate. I will have more info on how we will begin to honor her life with as we solidify plans that should begin on Sunday. I say begin because we must all fill the void she left and do it with her grace and spirit. I Miss You So Much Sis!"

Words are inadequate to express the heaviness in our hearts.  Robin will be sorely missed.

View a moving tribute video (produced by her brother) here: http://youtu.be/bcEInf2tKxI

View the NJ Legislature's Tribute to Robin here: http://youtu.be/L6HDA6kUIyc

Three men and their home at Templeton

COFAR Blog
February 11, 2011
Part 1 of 2

On a freezing cold morning last month, the fields of snow shone in the sunlight as Tony Shepherd drove through the Templeton Developmental Center campus in Baldwinville in central Massachusetts, pointing out the sights.

“It’s God’s country,” he said, of the 1,400-acre campus that stretched around us in all directions.  Directly ahead of us loomed the peak of Mount Monadnock in New Hampshire.

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.