I wrote the letter below to the National Council on Disabilities for their meeting this past week. In doing research for this, I came across much information on “Deathmaking” and am horrified by what I have been reading. But on the brightside, it has also led me to the works of Dr. Wolf Wolfensberger, Syracuse University and Social Role Valorization. There is a wealth of information here which is critical to our understanding of living with people who have developmental disabilities.
Letter addressed to the National Council on Disability (December 4, 2013):
In the recommendations to close and consolidate the Intermediate Care Facilities, please keep in mind that these are medical/healthcare facilities. These medical facilities provide not only nursing and medical care but dental, psychological, education, vocational and social/recreational in addition to habilitation for building skills for activities of daily living.
The North American Industry Classification System (NAICS) is the standard used by Federal statistical agencies in classifying business establishments for the purpose of collecting, analyzing, and publishing statistical data related to the U.S. business economy. In reviewing the NAICS, it is clear that they have a better understanding of the supports and services needed by our citizens with developmental and intellectual disabilities than many organizations which claim to advocate for those with DD/ID. As you can see from the excerpt taken below from the NAICS website published by the U.S. Department of Commerce. (http://www.census.gov/eos/www/naics/)
“Sector 62 — Health Care and Social Assistance
The Sector as a Whole
The Health Care and Social Assistance sector comprises establishments providing health care and social assistance for individuals. The sector includes both health care and social assistance because it is sometimes difficult to distinguish between the boundaries of these two activities. The industries in this sector are arranged on a continuum starting with those establishments providing medical care exclusively, continuing with those providing health care and social assistance, and finally finishing with those providing only social assistance. The services provided by establishments in this sector are delivered by trained professionals. All industries in the sector share this commonality of process, namely, labor inputs of health practitioners or social workers with the requisite expertise. Many of the industries in the sector are defined based on the educational degree held by the practitioners included in the industry.”
What has happened is that those who claim to advocate for people with ID/DD have only looked at the social assistance and have ignored the healthcare aspects. As you can see from Sector 62, those with ID/DD are on a continuum and we must provide supports and services for ALL people on that continuum – not just those who are “higher functioning”
This method of advocacy is tantamount to a new genocide -or “deathmaking” as described by Wolf Wolfensberger (2005) . This means that denying access to needed healthcare, separating people from their homes and communities leaving them without help and protection, imposing a dying role on people or destroying their will to live are all examples of a “new genocide” which many are imposing upon our most vulnerable citizens.
This is a crime – please reconsider your policies regarding “deathmaking.”