Speaking out for People with
 Intellectual and Developmental Disabilities

Surviving the Inclusion Delusion: Danny at 40

By Jill Barker

My son Danny is forty years old this week. He has multiple disabilities resulting from brain damage acquired during his first few days after birth. He functions at the level of a 6 to 12 month old infant and always will. And, yes, I know he is not really an infant.  We do not love him less because he lives and survives with profound developmental disabilities.

I first heard the term Inclusion around 1990. Danny was 13 years old and attending High Point School in Ann Arbor. High Point was an outstanding program for Danny, bringing together services, expertise, and a supportive community to accommodate children with the most severe disabilities, including complex medical and behavioral conditions.  

Inclusion, when applied to schooling for disabled children, is the belief that all children, regardless of the severity or nature of their disabilities, can and should be educated in regular classrooms with their non-disabled peers.  Inclusion was promoted by many disability advocates as a “right” for every child. Most discussions of the idea did not include an examination of whether the premise on which the belief is based is true for every child or whether it is required by the federal Individuals with Disabilities Education Act (it is not). In the face of any disagreement with the idea, promoters of inclusion encouraged families to take sides: “Are you for ‘Inclusion’ or against it?” Or as many advocates would have it, “Do you want disabled children isolated and segregated from the rest of society or do you want them to be fully integrated into and embraced by ‘the community’”? This continues to this day.

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Joey Jennings' Story

Joey's mother Susan tells the story of Joey's experiences in HCBS waiver settings and how the Jennings family managed to get him the care he needs at the White Haven State Center. (Joey's story was featured in the December, 2017 issue of EP - Execeptional Parent Magazine.)

Click here for Joey's Story

Don Putnam

April 7, 2017

We are sad to announce the passing of our own Don Putnam, of Kentucky. Don was a member of VOR for over two decades. He is survived by his wife Nora of 61 years, his four children, including his son David who resides at Oakwood, and numerous grandchildren and great grandchildren.

Don was a strong and passionate advocate, and his voice will be missed.

Don Rebecca Berlinda

Don Putnam, Rebecca Underwood, Berlinda Bazzell at VOR's Annual Meeting, 2013

Elegy by Tamie Hopp

Elegy by Carole Sherman

Samuel Golden

Sam Golden, one of VOR’s founding members, passed away on March 8, 2016. He died peacefully, at the age of 89, after batting malignant melanoma since last summer.

“There are some people who come into our lives that you know from the start are special. Sam was one of those people. I met Sam more than 20 years ago. I was a young professional at the time, new to VOR and new to disability advocacy. Sam immediately stood out to me as someone to learn from. He showed such quiet strength and intellect. He didn't need to be the loudest in the room or always have the last word. He understood true leadership meant listening, empathizing and doing. He drew on these strengths, along with a sharp intellect and a great sense of humor, to navigate his life's passions, namely family, disability advocacy and music.  I know I'm not the only one whose heart, mind, and approach to leadership was influenced by Sam's mentoring and example. I miss him dearly.” – Tamie Hopp 

Charles Hart

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 Hart 

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.