Last year at The Arc of Virginia State Convention in Charlottesville, VA, Simon Sinek spoke about the "Power of Why." This has been rolling around in my head for the past year. I follow him on Facebook, Twitter, and even read his blog. While, I will admit, I have yet to read his book.This morning I watched part of his presentation again and I think we are able to connect his message directly to the success of consumer directed services. But more specifically, I think we can connect it directly to having successful, long lasting employees (Personal Aide Care Givers) for recipients of Consumer Directed Services. If hiring an attendant to do a job for a consumer is all based on activities of daily living and NOT based on the employee understanding the "why," they may not have a successful experience. Maybe people (service people, legislators, people without connections to people with disabilities, potential Personal Care Attendants) are missing the "Why" when it comes to the needs of people with disabilities. People who "get" the "why" are the people with disabilities and the people who have been given the chance to experience and value all people as equals.
Personally, over the past 3 years of having consumer directed services for my daughter, who has a rare chromosome disorder, I have struggled to have long lasting attendants for her. As I watched Simon speak again about the "Why?" I wonder if I have been hiring Attendants based on the "What" NOT the "Why."
Parents and consumers of services are directed to hire people based on the activities of daily living (ADLs) that the personal attendant is required to commit to doing for employment. They are given the hourly rate, times of day that they are needed, and they are given the list of ADLs to complete. Sometimes the person who is hired is in need of a job, they may or may not have experience with completing ADLs for a person with a disability. Even if they have experience, does this mean the attendant actually knows "why" they are doing the ADLs.
I call this the "method to my madness"...it is my "why", but I'm not sure I really express this fully to attendants. And so, I hire an attendant for my daughter, I explain what needs to be done with out explaining the "why" and so I continually find the attendant DOES NOT do what I ask. They are unable to see the meaning in the direction. But imagine this...in simplest terms, I ask the attendant to change Sadie's diaper every hour. The attendant forgets to do it and the consequence is that Sadie gets a rash on her bottom. However, maybe if I had said to the attendant, she needs her diaper changed regularly because her bottom is sensitive and therefore, she will get a rash if you don't change her diaper regularly.
Another example for my daughter is that she needs her nutrition monitored daily. So, if I start off by telling the new attendant what I want my daughter to eat and what time based on a strict routine. I even post this routine in a clear place, but the attendant may think I'm controlling or picky, but in fact, my daughter has a sensitive stomach and her body does not show hunger. Therefore, my daughter will not grow and thrive and be healthy. She could become malnourished or dehydrated.
The explanation of the "why" would give an emotional connection to the attendant to the consumer. I can not tell you how many times I have come home and found that the attendant has forgotten to give my daughter her high calorie milk supplement. Not until I explain her need for it, did the attendant truly understand. It would be like skipping a G-tube feed.
Is this possibly the missing element to the success of consumer directed services for those of us that are struggling? If we are "starting with the why" when we interview and screen during the hiring process, then we can hire people who "believe what we believe"...that people with disabilities have value, contribute, and are entitled to a life just like anyone and everyone. In Simon's words, "the goal is to do business with people who believe what you believe."
If consumers and Parents who are the Employer of Record for the recipients of Disability Services know "Why" they need an attendant and recruit attendants based on the "Why" not the "What," maybe there would be more success serving people in their home. For example, when the person with a disability is screened for a waiver service, the nurse and social worker go down a list of the "whats"...can the person dress, feed, bowel, personal care, etc. But I think the crucial element missing here is fundamentally the "Why." People with disabilities are found eligible for services for the "What," but truly to them it is really for the "Why."
Recently, I heard Dr. Al Condeluci speak about this and remind the audience of the "why." All people want a healthy happy life, they want a home, they want friends, income, they want to be a part of life and all the wonderful things that go along with being happy.
Some where along the way people in service system, people who work "in the system" are more concerned with the "what of the services" rather than the "why." People who live and breath advocacy and disability are engrossed in the "why."
So all these thoughts lead me to think about how to get people who needs a job and people who need an attendant to be on the same page about their "why." Possibly better training to parents and consumers for the hiring process, perhaps courses for new employees on self determination and person centered planning, or training for employers of record and the consumer to explain their "why."
On a legislative advocacy level, we can invite policy makers to our homes to see that the policies they create affect people with disabilities. We can seek out our local chapter of The Arc, or Center for Independent Living. I also know that some providers in our area have courses and training for their employees, maybe consumer directed services can tap into resources that are already established too.
Overall, as Simon Sinek says, "the goal is to do business with people who believe what you believe." Over the years, I learned that, but not sure I implemented it with consumer directed services and attendant care for my daughter in my home. It's time to "start with the why."
