On January 25, 2016, Charles Hart, one of the original founders of CCMR, Inc.  (Formerly, The Hogan/Berry Parents Association) passed away and ended 50 years of advocacy for individuals with intellectual and developmental disabilities (ID/DD) and their families.

Charles Harts’ entry in to advocacy began when his first son Christopher was born in 1964.  Christopher was born with hydrocephalus a condition which caused him to endure several head surgeries in the first years of his life to alleviate the pressure of fluid building up on his brain.  Because of this condition, Christopher was diagnosed as being profoundly “mentally retarded” and would never function at a level of more than 12-18 months and not expected to live more than 3-5 years.

Christopher, however, did live well beyond expectations of the doctors.  When Christopher became school age, Charles’ advocacy began as an effort to obtain an education for his son. Because of his cognitive level Christopher was denied access to public education by the then Superintendent of Schools of Melrose MA.  Charles realized that this was a violation of Christopher’s rights took his fight to the Attorney General and Governor of Massachusetts.  Charles’ argument was simple - if a city or town provides education to its “normal” school age children then it must provide an education to its “intellectually and physically disabled” children as well to deny education based on a disability would be in violation of their human rights.   The City of Melrose argued that they were not denying Christopher an education, they city did not have a classroom and teacher for Christopher.

Through his efforts and relentless advocacy Charles won the fight to obtain an education for Christopher; subsequently a new classroom was established for him and a teacher was hired.  Mr. Hart along with the Attorney General of MA changed the Special Education laws in MA making it a law that all cities and towns are responsible providing education or the resources to all school age children who live there.  If the city cannot provide the education and resources to meet the child’s needs then the school district is responsible for providing it even if the resources are outside the school district.

Through out his tenure with CCMR, Mr. Hart advocated not only for his son, but for all individuals with ID/DD in Massachusetts.  His advocacy included state budget increases, guardianship laws, prevention of abuse and neglect, the Disabled Persons Protection Commission, access to services and very simply basic human rights. 

In the early 90’s Charles and CCMR joined VOR, a federal advocacy group originally made up of family advocacy associations like CCMR.  Mr. Hart acknowledged that services for MA individuals were reimbursed by the Federal government to the level of at least fifty cents on the dollar. Therefor, joining VOR was critical to the people he advocated for.

Charles Hart will be missed by many family, friends, fellow advocates and even those who he battled against came to respect him as a fierce advocate for the intellectually and developmentally disabled.  But his spirt will not fade.  CCMR, Inc. which was incorporated in 1976 still advocates for people with ID/DD in 2016 under the leadership of Charles’ son David Hart.

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.