Willowbrook Background Information
It was opened in Staten Island around 1947 to support 4,000 children, however, it quickly became overpopulated reaching 6,000 children by 1965. Unfortunately, there was not enough staff to support this may children to the point where important activities were never taught to these children such as eating, bathing, socializing and much more. One example they gave in the film was that typically, each child should get about 20min of individualized attention during meal time but the children at Willowbrook were receiving a neglectful 2-3 min. Hepatitis was found in up to 100% of the children in the school at one point. Sadly, there were many scandals about abuse cases of the staff upon the children, physical, mental and sexual.Thankfully, Willowbrook closed in 1987 and remaining residents were moved to other care facilities.
Toward the end of the documentary portion we watched, one resident spoke about what he remembers from the school. He was misdiagnosed with an intellectual disability at the age of 3 when he actually had cerebral palsy meaning he was of normal intelligence and primarily physically disabled, leaving him completely aware of his surroundings at the time. He recalled the smell, sadness, emotions and neglect that made up Willowbrook. Thankfully he was able to teach others about this horrendous residence because as long as this story is passed down, we can prevent these types of abuse from ever happening again.
Residents from a local center for disabilities
Aside from learning about Willowbrook, the residents from the center of disability were able to tell us about what their lives are like. One resident was able to go to the gym three times a week, take part in national conferences, socialize with friends, take part in the Special Olympics, learn how to cook, and hold different part time jobs. He seemed like one busy man! Honestly, the best part about hearing from the residents was hearing all the positive things they had to say about their lives. They loved the activities they were involved in, the things they are able to do, the staff they work with and much more. It is wonderful to see how far mental disability centers have come since Willowbrook.
Medical Interactions: Do's and Don't's
We were able to ask the residents about their provider interactions, things they preferred and things that bothered them. Completely understood, they did not feel respected when a provider addressed their aid instead of them about their medical conditions and initial interviews. Since they do have a good idea about what is going on in their own body, they deserve to be treated like other patients, the only difference is that they also have their aid who can answer some more difficult questions and fill in gaps to their HPI. They feel disrespected when a provider or nurse walks into the room and only introduces him/herself to the aid while completely ignoring the patient. The best approach to this would be to address the patient right when we walk into the room and if their mental capacity is not sufficient for gathering information, then we can turn to the aid for assistance. This seemed to be the preferred method when handling this population since there is such a great continuum of intelligence. For example, the residents that came to speak to us were able to answer almost any question we would be asking them. At the end of the interview we could them turn to the aid and ask if there is anything they would like to add in case the patient left it out.
Cerebral Palsy and Computer Technology
The last lecture of the day was fantastic. A man with cerebral palsy came in to speak with us about who he was, what he looked for in a great provider, and how his disability impacted his life. Since fine motor movements were difficult for him, talking is fairly difficult, he also had a power chair connected to a computer system. The computer system was controlled by a mouse-dot on his forehead that allowed him to select words from a speech application. Not only was his speech well written (he definitely has stronger vocabulary than me) but he also full of life and even though a monotone computer was reading his speech, the choice of words gave the speech life. It is a talent to be able to do that. He also shocked all of us when he said he went skydiving 2 years ago and said when people ask him if he would do it again his answer always changes, but today he said he would do it again =p. However, he did talk about a time when his caregivers did not understand his condition. He was getting imaging done where he needed to be still but due to his involuntary movements it was making the scanning difficult where he was being scolded at but could not communicate back to the staff about why he was the way he was. This made me not just sad, but frustrated. It’s easier to be mean to someone when we don’t understand their situation, which is why we always need to think about what the patient could possibly be going through before we make judgments. He taught us many valuable lessons as well, for example “don’t make assumptions” because people with disabilities have all sorts of capabilities that sometimes we discount. He wrote his entire speech using this app and was even able to show our class how he uses the software. At the end he opened the floor for questions.
How can caregivers accommodate for times when you are not near your device for communication?
“I can have somebody write out the alphabet to look at the letters.”
Does it help if we watch your screen and see what you are trying to type so that maybe we can guess the longer words, or would you rather not be interrupted?
*He laughed and indicated that he would rather have us guess to save time.*
What speech application do you use?
How long did it take to get use to the communication device and application?
“Only 1 year.”
Does the insurance cover the costs for your chair and application?
All in all, this was definitely one of my favorite lectures of the term. I feel like I learned so much about the mentally and physically disabled population and the significant differences in their care. It is really common for health professionals to treat mentally and physically disabled people the same when in reality they are all of different understanding and capabilities. We need to treat them as individuals just like everyone else: gauging their knowledge and tailoring our interactions to their understanding. It was great to be able to ask the residents about their lives and hear the answers directly from them about how they want their care to be handled.