Community-based care in group homes is certainly appropriate for the vast majority of people with intellectual disabilities.  But it doesn’t work for everyone.  If you don’t believe that, talk to James Sanchez.  If anyone’s experience illustrates the continuing need for developmental centers such as the Southbury Training School, the experience of James and his brother Edwin does.
 
It was 1979, and STS at that time was still open to new admissions.  Edwin was accepted.
 
James maintains that Edwin thrived at STS during the next 20 years.  While he first lived in a large dormitory with eight to 10 beds in a room, the conditions steadily improved at STS, and Edwin was eventually moved to one of many new, smaller cottages on the campus.
 
The doctors and other staff at STS were able to put Edwin on medications that kept his aggressive behavior under control while allowing him to function successfully.  He attended day-work programs in the community and enjoyed outings to restaurants, movies, swimming pools, and camping grounds.
 
Edwin, like other STS residents, also had the freedom to roam the STS grounds under the watchful eyes of the staff. 

“It was a form of independence,” James says.  Edwin liked to walk from his cottage to the administration building — the length of about two football fields — in order to get a soda and chips from the vending machines there.  He was taught how to wash his own clothes, how to set the table for dinner, and how to interact appropriately with other people.
 
Edwin knew everyone at STS and everyone knew him.  “It’s like a large family,” James says.  Even the firemen on campus knew and liked Edwin.  Once, James was pulled over by a state trooper while driving on I-84.  “He (the trooper) asked me where I’d been and where I was going, and I said I’d been visiting my brother, Edwin, at the Southbury Training School,” James says.  “‘Oh, you mean Eddie?’” James recalls the trooper as saying.  “He gave me a break.”
 
But things were about to change for Edwin.

By Cheryl Felak, RN, BSN * Seattle, Washington * Dec. 31, 2011

    Thomas now lives at Fircrest, the Residential Habilitation Center (RHC) (a state ICF/MR and specialized DD Nursing Facility) near our home.  It has been a Godsend, although he was denied admission for about a year. The State’s Department of Developmental Disabilities (DDD) claimed that there were no resources for him (even though he was on a Home and Community Based Services (HCBS) waiver). Before his admission to Fircrest, DDD suggested that for the next crisis we would just have to call the police. 

   Since moving to Fircrest, he has not had to be hospitalized once and has been stable. He is so happy in his home. It has also allowed our family to regroup since our family disintegrated and my health also became life threatening in efforts to manage Thomas at home.  We have also had to file for bankruptcy.  Moving him to the RHC has enabled us to work and become productive members of our community and also be advocates for other families who are in the shoes we were in and are in.

   When Thomas was 14 years old and living at home, I recorded him during a typical manic/psychotic episode – typical for Thomas; typical for others dealing with this. During such episodes, everything becomes intense and all-consuming for the caregiver to maintain the health and safety of the child. During the episode I taped I was trying to get Thomas to go to the bathroom prior to leaving for the day camp, which he really loves. You'll hear screaming, disorganized thought patterns, and Thomas hitting and biting himself during this taping.  I hope this audio helps people (citizens, advocates, legislators and policymakers) to hear what life is like for many of us when our child is home.

   The audio was also in response to a question by the Executive Director of an Arc chapter who asked me, "If RHCs are so great, why we don’t see people in Olympia testifying how much they LOVE living there?"

   This comment alone tells me that The Arc advocates do not understand the issue of the ICF/MR residents at all. Many of our residents are mostly non-verbal, may not tolerate the trip to Olympia, may not tolerate crowds, may not be able to maintain appropriate behavior skills for very long or may be too medically fragile to travel.

  Thomas has taught me a lot in our journey together. I’m motivated to maintain the good, compassionate home he now has at Fircrest.. I’m motivated to help others.  I founded “Because We Care – Beyond Inclusion” as one way to help.

     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

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.

By Ed and Virginia Carraway

Jacob 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.

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.