VOR and Me

For those members who I haven’t had the pleasure of meeting yet, I would like to take a moment to introduce myself. My name is Hugo Dwyer. My sister Marty and I are co-guardians of my brother Tom, who turned 59 earlier this month. Tom has lived at the Southbury Training Center (STS) in Connecticut (CT) for over forty years. It is his home, and my family has been fighting for years to prevent the State of CT from closing STS and moving him into ‘The Community’.

Tom is profoundly developmentally disabled (a condition that had been termed severely mentally retarded for most of his life), autistic, and bi-polar. He has physical problems, including Parkinson’s Disease and a loss of vision through a detached retina and cataracts. He has trouble walking, and needs a gait belt or a wheelchair to get around. Tom has to have his food pureed so he won’t choke on it. He doesn’t speak, and cannot brush his teeth or go to the toilet by himself. Additionally, Tom has Pica, and requires one-on-one care, twenty-four hours a day, seven days a week. 

The attention Tom receives at STS has been excellent. He receives the level of care, supervision and support that he needs, and our family has been very pleased with the quality of care administered to his physical, psychiatric, and behavioral problems. We have heard all of the arguments favoring community residences and - after having visited group homes to see what they have to offer – we remain convinced that the care he receives in a larger ICF is most appropriate to his needs. In the words of our parents’ group, “STS is not an institution, it’s a solution!”

VOR has helped our family to keep STS open, to stand up to the people, the organizations, the lobbyists, and the legislators who would shutter Tom’s home based on an ideology that opposes congregate facilities and ICF’s. With the help of people like Tamie Hopp, Julie Huso, Peter Kinzler, David Hart, Larry Innis, Jane Anthony, and countless other members of VOR, we have learned how best to fight for Tom. Thanks to VOR, we know that we are not alone in our fight. We know that thousands of other families across the country share the same concerns.

A few short weeks ago, I became the Executive Director of VOR. I am humbled by the responsibilities of this position, and by the faith that members have placed in me to help keep VOR vital and to expand our mission, our advocacy, and our achievements over the years ahead.

Still, I am only a small part of this organization. The real VOR is you. Thank you for all you do!

Hugo Dwyer

Our son is at Fircrest, an RHC. Our son’s life was literally saved by Fircrest. Our story is one you should listen to, because there are thousands of people like our son who are entering the system and many of them will need the services that the RHCs offer which cannot be met ‘in the community’.

A year ago our son, Forrest, was 18 years old and 6’2” we were getting attacked more and more as were his teachers and group home staff. He was scratching and biting intensely.

He sent 3 people to the emergency room.

Read more

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

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.

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  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. 

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.