Updated: Jan 27
"The true measure of any society can be found in how it treats its most vulnerable members." - Mahatma Ghandi
Kristen Dille, age 30, is a bright young woman with a keen sense of humor. She is also a total care quadriplegic who communicates with eye-gaze. Kristen attends the Hi-Hope day program in Gwinnett five days a week and enjoys interacting with staff and other members of the program. When her family moved from Missouri to the Atlanta area, they wanted to be close to Hi-Hope because they believe it’s the best care Kristen could receive.
The middle child of the family, Kristen is surrounded by the love of her two sisters and her parents, John and Karen Dille. Their lives revolve completely around their daughter. They exercise in the early morning each day order to be in the best shape to take care of Kristen. Around 6:30 a.m., they get her ready for her day program and then leave work at 2 p.m. to pick her up. They then take her out of her wheelchair for physical therapy to avoid contractures and pressure sores and engage her intellectually with her eye-gaze computer, conversation and reading. Afterwards, the Dilles make dinner and get her ready for bed.
Although Kristen has had a revolving door of caregivers, the Dilles say the Direct Support Professionals (DSPs) that have worked with her over the years have been high-quality, loving, caring and motivated individuals. However, it’s unfortunate when a caregiver invariably leaves for a higher paying job elsewhere. Not only does it cause a disruption in Kristen’s life, but training a new DSP on her needs and communication can take a while. She can follow conversations and is highly intelligent, but because she is a quadriplegic and has to communicate with eye-gaze it is VERY difficult for her to communicate her needs and be understood. Continual changes in her DSPs have resulted in low engagement on her part, low morale on her part and waning hope that she will ever be able to communicate meaningfully.
“Just as every individual is unique, every special needs individual is unique and has unique needs for their development to equip them to live the most independent and full life possible. It takes a continuity of effort, from a trained, caring and motivated individual to know the individual needs of their clients. This involvement must be provided over an extended period of time for development to occur. It takes many months for an inexperienced DSP to become trained in the highly nuanced needs of special needs people, become familiar with them, gain their trust and provide the coaching necessary for meaningful development to occur.” said John Dille, Kristen’s father.
It takes truly special people to do this work. There’s nothing in their job description that requires them to love the people they support, yet they do it every day. They see the worth and value in these individuals and take the time to get to know them.
“They don't do it for the money, it is a calling. It is a higher purpose. Just showing up for work daily is a heroic act that most people wouldn't sign up for, for ANY amount of money. Take a look at the job application, requirements and responsibilities of a DSP. They have to go through extensive background checks and be fingerprinted even before they go into the training process. Then take a look at the job descriptions for local jobs paying nearly twice as much - our DSPs deserve more,” said Dille.
If Hi-Hope and the DSP services offered there were unavailable to families such as the Dilles, they would have no viable alternative. They wouldn’t be able to hold down jobs in order to financially support themselves or Kristen because they would take over as 24/7 primary caretakers. DSPs are vital and necessary for families with individuals living with disabilities.
When asked what he wishes the public knew about these services and individuals such as his daughter, John Dille responded with this:
“Every day we give thanks for Hi-Hope, and we support them to the extent that we can afford. If you haven't ever visited one of these programs for a meaningful amount of time, you should. The participants in these programs are without exception, the kindest, most loving gatherings of people in one place you can find. They share, love each other, help each other, and care about each other better than I see anywhere else in our society. The rest of us can only aspire to be more like them. They deserve our help and the people who care for them deserve more.”