A Historical Perspective on Health Risk
Written by Erin R. Mathews, BS, DC
The first person I met who had severe cerebral palsy also had a Ph.D. A friend and colleague of my mother’s, she was the Director of Special Programs for individuals with complex sensorimotor issues at Glenwood State Hospital School in Southwest Iowa. Visits to her home, where she lived with the assistance of a personal aide, were pleasant interludes where the adults conversed over coffee and my brother and I played in the shady backyard. They were an integral part of my definition of a normal childhood.
Those who became involved in the field by the mid 1960’s (yes, there are still several out there) did so at an extraordinary time in history as it relates to people with disabilities. It was the tail-end of the time when families automatically handed “hopelessly crippled” over children at birth, many to see them only a few times a year, if ever. It was a time when individuals in custodial settings, including prisons, were literally regarded by the system as legally dead in terms of their personal rights. In other words, they had none. Over the past fifty or so years we have been treated to a front-row seat at the growth spurt in our understanding and treatment of people with specialized needs.
In 1965 a person with Down Syndrome could expect to live only until their mid-twenties, 75% of individuals with cerebral palsy were also diagnosed as having an intellectual disability, as opposed to 25% today. If you had hit the average citizen with the term “mainstreaming,” they would probably have thought you were referring to an innovation in the field of civil engineering. In 2014 people across a wide range of disabilities can expect to live a life span equal to or approaching that of the population at large. They can expect to be college graduates, business owners and valuable members of their extended communities.
“HRS Inc’s stated goal over the past several years has always been to prevent those negative health events that are preventable through identification and appropriate intervention at the earliest possible point.”
Technology and medicine have made great strides in the past fifty years. Access to education and employment are greatly improved and more people are remaining with families, guardians or living independently with supports. Wonderful things, all of them, but we face continued and growing concerns over community acceptance and access to needed services. It therefore begs the question, how do we keep what we’ve gained and continue to progress? The answer to these questions will never be simple but they can be distilled down to some very basic elements: Reduce the need for intervention when and wherever possible as well as support and promote things that are already working.
Our friend from the early days in Southwest Iowa came to share our common path by design, not by accident. She had a mother who loved and believed in her at a time when her family, her community and virtually every health care professional probably considered her, well, let’s be kind and say…unique. She made every possible resource available to her daughter against great odds and she, her daughter and the special needs community were rewarded by her vision and perseverance. In many ways we are and will continue to face increasing challenges today and into the future. Funds are dwindling and there is still much ground to be gained in enjoying access to the wide world. If it could be done in the 50’s and 60’s it can certainly be done now. How we choose to do so will continue to define the path of this community.
Building a Better Future
The next several articles in future newsletters will deal with each of the areas of the HRST and discuss how they can be used to identify both areas of need and non-need. “Normal” is such a loaded word, but every person in the world is afflicted with it invarying amounts and in one form or another. HRS Inc’s stated goal over the past several years has always been to prevent those negative health events that are preventable through identification and appropriate intervention at the earliest possible point. The unspoken opposite side of that is that we don’t hassle people when they don’t need it. Unnecessary interventions can be an expensive nuisance. They often prevent the public at large from seeing that they share more similarities than differences with individuals with special needs. They can also prevent gains in an individual’s personal growth and development. Nobody who works in the supportive care field and most compassionate humans do not want to see anyone go without the things they genuinely need. With good advocacy and the proper supports it doesn’t have to happen.