Lance Hegland, a Minnesotan with a disability living in Minneapolis and relying on self-directed direct support services, describes the challenges and impacts the workforce shortage has had on his life. The video transcript appears below near the bottom of this post.
This video is part of a series of videos being put together by Minnesotans for Direct Support Improvements that will capture the experiences and ideas of people with disabilities and older adults relying on direct support, support workers, families, friends, provider organization team members, plus community leaders.
Stay Up-to-Date
Stay up-to-date with the personal stories, information, and community discussions being shared by Minnesotans for Direct Support Improvements (MNs4DSI) to unify our communities and improve our direct support system. Check out the links to our social media below:
We look forward to meeting you, learning about your experiences, hearing your ideas, and working with you for a better Minnesota!
Video Transcript
I was born with a form of muscular dystrophy called spinal muscular atrophy. So, I rely on the help of others to get in and out of bed, use the bathroom, get beverages and food, and more.
Each and every day, I can’t escape my dependence on others for help meeting my basic human needs. It isn't my choice or a luxury; it’s just a fact.
Since Minnesota’s shortage of support workers began around July 2010, most of my time, energy, and other resources are tied up scrambling to find and keep people to help me.
I’m responsible for recruiting, screening, hiring, training, scheduling, and otherwise managing my support team.
For helping me survive, workers often receive uncompetitive and unlivable wages plus few, if any, employment benefits. This is because of limited funding available through various state programs that I rely on.
It’s like driving on roads littered with potholes, faded lane paint, and rusty, barely-hanging traffic signs — it’s a health and safety hazard.
Despite my best efforts, I haven’t been able to meet my health, safety, and dignity needs on several occasions over the past years. These incidents are becoming more common and more severe. I'm terrified. I struggle to figure out how to survive week-to-week and month-to-month.
I struggle to figure out how to survive without burdening my support team, my friends, and my family AND without experiencing too much discomfort — physically and emotionally.
Because Minnesota’s support programs are collapsing under the quickly growing demand for help, inadequate funding, and lack of available workers, I feel trapped more often. When I can’t find qualified and available workers, I need to choose: do I bear with the health and safety risks plus physical and emotional discomfort OR do I burden friends and family by asking for their help. My parents are 80 years old and live 100 miles away. Other family and friends have their families and jobs to attend to; they can’t afford to take time away from their job, lose that income or those benefits, in exchange for the little pay I might be able to offer, no matter how much they’d like to help me.
My increasingly louder and more urgent pleas over the years to elected officials, social workers, public health nurses, and others seem to blend in with hundreds of thousands of other Minnesotans experiencing equally challenging circumstances.
Help either isn’t available, cannot be found, or doesn’t exist when a support worker gets sick or injured, needs time off for personal or family emergencies, goes on vacation, or suddenly quits. Without a safety net, I’m ultimately alone in my attempts to survive. It creates a lot of stress, prolonged anxiety, which grows with each new challenge.
More frequently, I experience overwhelming anxiety, panic, dehydration, malnutrition, severe headaches, and fecal impaction.
More frequently, I have difficulty focusing. I lose awareness. I’m jumpy and irritable. I feel trapped in a never-ending, downward spiral of needing more help, more often, finding help less often, increasingly unable to meet my basic human needs.
I feel guilt and shame for not being able to find and keep enough reliable workers; for having to ask other support team members, friends, and family for help. Guilt and shame for struggling; for not being more organized, more focused, smarter, faster, and emotionally stronger.
I have difficulty waking up to face reality, to perform tasks that seem to have little to no effect. I have difficulty falling asleep because of racing thoughts, thinking of all the to-dos and what-ifs, and avoiding nightmares.
I have nightmares about desperately needing help, being in excruciating pain, screaming and begging for help, as people watch from a distance or pass by, avoiding eye-contact.
Nightmares about being trapped in a suffocatingly hot car or a burning vehicle or a car sinking in cold, icy water.
I often feel broken — physically, mentally, and emotionally. I crave an escape, anything to lessen the anxiety, reduce the nightmares, and avoid reality. I’ve grown more apathetic; numb.
I know I’m not the only Minnesotan struggling. Many struggle, often alone and isolated. The support worker shortage has created widespread risk of immediate harm to the health, safety, and dignity of nearly 1 in 5 Minnesotans — nearly a quarter of a million people across Minnesota.
If you’re a Minnesotan with a disability or older adult who relies on support services, if you’re a support worker, a family member, a friend, or someone who works with an organization coordinating direct supports — someone who’s struggling to meet health, safety, and dignity needs or someone who’s seen these struggles — please join us. Your experiences are important. Your feedback is needed and powerful. Your input is critical. Your ideas are valuable. Please share with us.
If you’re interested in being a part of a community of people who are passionate about supporting each other’s health, safety, and dignity, please subscribe to our updates at join-mns4dsi.civic-innovations.com
Thank you for listening to my story. I look forward to hearing about your experiences and working with you to tackle these challenges.
Thank you.
Excellent video. I wish I had ideas on what could help. Thank you for all you do to try to make the world a better place for others with handicaps/disabilities. The government services need to step up to the plate and help our Americans with disabilities with the assistance they need instead of turning a blind eye to it. Good luck going forward.
ReplyDelete