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Letter: Still at work on hay forts

This session in Minnesota, we passed a 5 percent funding increase for those who take care of people with disabilities and seniors in their homes. This increase is long overdue, but much more needs to be done if we are going to ensure good quality care for seniors and people with disabilities. Their care providers have not received an increase in more than six years. They are not adequately paid for the hard and valuable work they do.

We talk a lot about numbers in the Legislature, but we need to put faces with those numbers. We need to see the people affected by the 5 percent increase. I can speak from personal experience about how these care providers touch the lives of people with disabilities and their families. I had a brother, Kyle, who was intellectually disabled. Although he was two years older than me, and bigger than me, intellectually he was like my little brother; he was my big/little brother. The two of us were very close.

I remember one day as a child building hay forts in the hayloft of our barn with Kyle. I was having so much fun, and I felt so safe and protected in our hay fort that I told Kyle, “I wish we could stay here forever.” Kyle gave me a concerned look and said, “We would miss school.” I was a little confused by his response because he said this like it was a bad thing. I was a typical 10-year-old, and I said, “Yeah, wouldn’t that be great?” He responded saying, “But I like school.”

As we sat safe and secure in our hay fort, he started to tell me about his friends, other children with intellectual disabilities in his special education class, and he told me about his teacher, Mr. Nissen. He really liked his teacher, and he made school sound so fun that I began to wish I could be in his special education class with him.

That day in our hay fort stands out in my memory because it would be the last time Kyle and I would build hay forts together. Not long after that, Kyle passed away in a drowning accident on our farm. He was only 12 years old. At the funeral, I saw all of his friends from his special education class and Mr. Nissen, his teacher. Mr. Nissen gave us a card in which he shared stories about Kyle and the fun times they had with him as a class. In the card he also let me know Kyle told his class stories about things he did with me, like building hay forts in the loft of our barn. It was clear that Mr. Nissen really cared about Kyle and his other students.

I did not see Mr. Nissen again until almost 40 years later. Last summer, I saw him at a group home in Moorhead. He was still caring for people with disabilities. This kind of dedication is what people with disabilities need. Care providers, like Mr. Nissen, are the ones who make us a more compassionate society that ensures no one is left behind. They ensure that everyone will have a chance to develop to their fullest potential and live a happy and fulfilling life. They are not doing it for the money; their pay is very low. They do it because they care. They do it for the psychic income of knowing they are making a positive difference in the lives of others.

Unfortunately, you can’t live on psychic income. You can’t raise a family or feed your children on psychic income. It is heart wrenching to see an outstanding and compassionate care provider leave the profession they love and the people they care for because they have to in order to support themselves and their family. For many of those with disabilities, it can be a traumatic experience to lose a care provider who has become like a member of their family.

A stable care provider is the most important factor in the quality of life for those with disabilities. They provide them with safety and protection. They help make their lives happy and fulfilling. In my own mind, when I look at these care providers who are so dedicated and compassionate, I see people who are still building hay forts with my brother’s friends.

Eken, DFL-Twin Valley, was the chief author of the 5 percent increase for long-term care providers, including nursing homes and waivered services for people with disabilities and seniors, which passed in the 2013-14 session.