Spend-down limits must be fixed so people can live in dignity

My name is Rik Seiler and I live in St. Paul. I sustained a traumatic brain injury in 2014 when a car slid into me on an icy patch of Highway 169 in Shakopee. I had just rescued a 19-year-old driver whose car had flipped on that same patch of ice when I was hit. After a two-month induced coma I had to learn to talk, swallow and eat all over again. A series of infections further complicated my recovery and left me with permanent physical disabilities in addition to my brain injury.

Today, I have limited mobility of my arms and legs, suffer vertigo, short-term memory loss and have a hard time staying organized. It is humbling to admit I now need help paying my bills when I used to be able to balance my checkbook in my head.

I am thrilled that I have regained my independence with the help of Medical Assistance CADI waiver with PCA services, medical transport, meals and an independent living skills worker. I live on about $1,000/month from Social Security Disability Insurance which I paid into working construction for 25 years. But, because this is over the $990 of poverty level, I am expected to pay all my medical bills until I have just $792 per month to live on. It feels like I am being penalized for working hard my whole life and paying into Social Security.

I am only able to afford my rent through the generosity of others. One day soon that will end and I am worried that I won’t be able to find housing I can afford and pay my spend-down. It makes no sense that a program meant to help me live independently puts my very independence at risk by leaving me with so little income to live on. HF 225/SF 250 will allow people with disabilities like me to keep more of our social security income and savings to pay rent and other living expenses. I went from being a rescuer at the scene of an accident to someone who now needs a helping hand so I can take care of myself and live independently.

-Rik Seiler, St. Paul

 

Her situation would also be helped

After reading the article on Bringing Reality to the Capitol – I wanted to let you know I am also in the same situation as Rik Seiler – after a life-changing event.

I have very limited income on disability and after the medical spend-down and my house payment, I am left with a very low amount for other bills. It is hard to live on such a low amount. It would help if the poverty level was raised so people like me don’t have a large spend-down – I do have a PCA who helps me so I can stay in my own home – as it is a lot cheaper than the expense of assisted living or a nursing home. Independence is highly valued.

Not many people can live on the amount disability pays – and I worked hard before I became permanently disabled. I raised two successful children. Please bring reform for those of us who need it.

-Carmen K. Schmoll, St. Cloud

 

She asks, how long can the cycle continue?

The cycle continues, as direct support professionals (DSPs) and individuals with developmental disabilities endure another anxiety-provoking budget surplus calculation exceeding one billion dollars for 2017. Gov, Mark Dayton’s statement on February 28 projected a $1.65 billion state surplus for fiscal year 2018-2019 and a $743 million ending balance for the biennial budget, has generated calls, editorials, and advocacy movements demanding quantifiable distribution of public funds.

Dayton communicated “this budget forecast is more very good economic news for Minnesota. This is the eighth straight budget forecast that shows still-further improvement in our state’s finances.”

I think I speak for all direct support professionals, myself included, when I ask, how does legislation plan to solve our workforce epidemic or is this not included in your “forecast”?

This is not the first-time Minnesota legislators premeditated a budget surplus and had to plan a strategy for distribution. In the fiscal year 2015-2016, the state of Minnesota had another budget surplus which also exceeded one billion dollars. Our government and the collaborative legislative authority didn’t distribute any funds appropriately. Direct support professionals didn’t receive any cost of living modifications who work regardless of monetary rewards, yet who work up to three jobs, have families, are attending school, and are dedicated not to the job itself, but to the agency we represent and most important, the people we serve.

Chief Executive Officer Norm Munk, of Partnership Resources, Inc.; St. Louis Park provides recent statistics proving there are currently 9,000 unfilled positions and record turnover rates of people working directly with people with disabilities. A select some of our elective leaders are choosing to overlook once again, and disregulate the value of direct support professionals. A person-centered model all legislators should adhere to is: “If it saves the life of your loved one, it would all be worth it.”

As a social worker who is currently pursuing her MSW degree, and working full-time as a program specialist (DSP),
I feel obligated to advocate for my fellow direct support professionals, my agency, and the population I “choose: to serve. Choice, integration, and a person-centered approach are qualities we promote within a person regardless of their abilities.

We are the reason your loved one is cleaned, fed, dressed for the day, and kept safe. In fact, individuals I serve say “that personal care is literally life or death to many of us.” We are the reason your loved one can work, pay taxes, contribute to our economy, and experience such bright opportunities our developing community offers. Best Life Alliance Chair and parent Pam Gonnella said “It is critical that lawmakers invest in home and community-based services that affect thousands of people with disabilities across the state, including her own daughter. If we don’t address the workforce shortage, the entire system will fall apart.”

Governor and legislative officials, please address the workforce epidemic and the direct service anxiety provoking concern as your top priority in 2017. Hear our voices when we rally and listen to the many elected officials who worked diligently and support our cause. Adhere to a person-centered model! Show the world how Minnesota values our workers who are the backbone and foundation for caring for all of us.

-Kayla Beuning, LSW
 Program Specialist
 Partnership Resources, Inc.
 St. Louis Park