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.)
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.
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 Putnam, Rebecca Underwood, Berlinda Bazzell at VOR's Annual Meeting, 2013
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.
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!