Click here for original version of letter
September 11, 2013
Ms. Ann Knighton, President
836 S. Arlington Heights Road
Elk Grove Village, IL 60007
Dear Ms. Knighton,
We are all so pleased to see that Polly Spare is your 2013 Voice Award recipient. No matter how one might praise Polly and her work, it would be an understatement. Her energy and her impact in addressing critical issues involving those who do not chose to be care-dependent are unmatched.
In Pennsylvania, she often stood alone against the statist-driven mindset of our state's governors, human service bureaucrats, and their "advisory committees" dominated by one-size-fits-all advozealots. Polly's example continues to inspire us parents and families as we battle to protect our right to learn about and then choose options we feel are best for our sons and daughters with mental retardation, autism and related disorders of behavior and communication.
Particularly memorable was Polly's exhaustive 24/7 support in the defense of the Western Center state residential care and treatment facility against the 12-year assault by the combined forces of Pennsylvania's Association for Retarded Citizens, its Protection and Advocacy Agency, its Department of Public Welfare Secretary Feather Houstoun and Deputy Nancy Thaler, and its Governor Tom Ridge.
This fight was lost in 2001 partly due to overwhelming state funding, but primarily due to the untimely death of our magnificent attorney William Burke, another most deserving VOR Award recipient.
Polly Spare and all of us will always grieve the resultant deaths of 38 former Western Center residents, uninvestigated, during and soon after the brutal closing process. Only God knows how many more have left this earth prematurely due to theses statists, as well as the thousands more languishing on waiting lists, in unstable homes, prisons, mental health units, tent cities and under bridges.
Thanks to organizations like VOR, the nationwide battle against this inhuman, anti-family scourge is still not lost. And, I am personally grateful to have been on this earth the same time as all of you - and Polly Spare.
Daniel A. Torisky
President, Autism Society of Pittsburgh
Secretary, Autism Society of Pennsylvania
Past President, Autism Society of America
Past President, Western Center Board of Trustees
cc: Polly Spare
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.
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 about Virginia and Mary's legal victory
Watch touching newscast on Mary and Ginger's journey on VOR's Youtube Channel
By Fr. James Boyle
Friends of Rainier News
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.
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.
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.