The vast majority of VOR's members are involved in this organization because someone they care about has intellectual and developmental disabilities. In this section, we will regularly share their stories. Their own stories in their own words explain WHO VOR represents and WHY we do, better than we ever could.

Do you have story to share? We welcome your submission. Send it to This e-mail address is being protected from spambots. You need JavaScript enabled to view it , or call toll free 877-399-4867.



Photo Consent Form

VOR is seeking photos of –
1) Your family member(s): Please email no more than three (3) pictures to Harris Capps at This e-mail address is being protected from spambots. You need JavaScript enabled to view it , with this signed photo consent form, along with your name and the first name of your family member. Your photo cannot include other individuals unless we also receive a photo consent form for those individuals. If you do not have an electronic signature, your email response will suffice. 
Over time, we will decide which ones to use.
As special thanks to Harris Capps, VOR’s South Carolina Co-State Coordinator, who has agreed to help VOR collect your consent sheets and photos for VOR.  
 

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.

 

 

Our Son Forrest

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

 

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

 

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.

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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. 

 

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.

 
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