Speaking out for People with
 Intellectual and Developmental Disabilities

Holly Honeymoon: Victory is Christmas present for one family and hope for others

by VOR, January 31, 2013

After an eight year journey, Virginia (“Ginger”) Massa now calls Holly Center home.

Families in similar situations across the country will appreciate what a monumental challenge it was for Ginger and her family to secure placement at Holly Center. As a Medicaid-licensed intermediate care facility for persons with intellectual disabilities (ICF/ID), becoming a permanent resident meant bucking a state and national trend.

Ginger’s good fortune is not lost on Mary Reese, Ginger’s stepmother and a VOR Board Member. As a national advocate, Reese knows all too well that Ginger’s struggle for the past eight years is one shared by thousands of individuals across the country.  She recognizes that her job as an advocate is not done.

“Our elation at Ginger’s placement at Holly Center is diminished by the knowledge that thousands of others are ‘stuck’ in community residential programs without consistent care and comprehensive services that are so necessary for their well-being.  I wish we could have done more to change this system which is so heartless and cruel in the name of individual rights and the subjective interpretation of least restrictive environment.”

Read more

Read about Virginia and Mary's legal victory

Watch touching newscast on Mary and Ginger's journey on VOR's Youtube Channel

Read update from EP Magazine, December 2014: Home of the Holly Holidays

Home At Rainier

By Fr. James Boyle
Friends of Rainier News
February 2012
Edited by J.R. Hardman, attorney and cert. pro. Guardian

    Persons with developmental disabilities are above all else human beings. Society often sees their disability first and the person later, if at all. Because they are persons first, we must respect their individuality and their gift to the community of persons. We can model our concern and care for them in ways and circumstances which allow them to grow and be free enough to bring their gift as human beings into the greater society.

    Respecting the individuality and complexity of persons with developmental disabilities allows for multiple approaches to care. Some can flourish and very well in the greater community setting. We welcome and support such settings. Our experience also gives great credence to giving some persons a more supportive, more structured setting in which to live. What follows are ideas from observations about Rainier School as a home, a community, and a place of mutuality.

   The word home has many meanings according to our experience. Home is a place of belonging. Home is a place to be treasured as an individual. Home is a place of security which enables us to grow.

Read Fr. Boyle's complete article.


  Editor’s note:  2011 ended on a sad note with the passing of longtime Rainier School Chaplain Father James Boyle.  One of his last endeavors, just two weeks before his passing, was a piece he did about the meaning of home. Fr. Boyle was a Catholic Priest at the Archdiocese of Seattle for 50 years. He was the priest in the small town of Buckley, WA where Rainier School [ICF/ID] is located. He served as the Chaplain at Rainier School devoting 35 years to serving the spiritual needs of the developmentally disabled, their families, and care providers. He also served as Chaplain for Fircrest School in Shoreline WA [an ICF/ID and Skilled Nursing/ID facility] and L’Arche Homes [a group home organization]. He cofounded REX, an educational program for people with developmental disabilities. In 2006 he was given the prestigious Hunthausen Humanitarian Award in recognition of his ministry to serve the poor and suffering. 

Edwin Sanchez's ordeal in a group home

Southbury Training School
January 18, 2012

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.

Thomas' Story

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.

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

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.