Nebraska disability advocate Tim Kolb, 74, left his mark on state regulation | Nebraska
When 8-month-old Tim Kolb was diagnosed with a rare disability, a doctor told his parents that he would not make it until his first birthday.
Instead, the Franklin native died on Saturday at the age of 74. A state law was named in his honor, and his influence was reflected in many other laws and policies that apply to people with disabilities.
What has come to be known as the “Tim Kolb Change” enables competent adults with disabilities to manage their own care from home assistants rather than relying on licensed health professionals. The provision also enables parents and carers to direct the care of children and incompetent adults.
Kolb campaigned for change in 1995 after he was hospitalized and had a tracheostomy, a breathing tube in the neck. After that, state officials forced him to stay in a care facility because, according to state law, a doctor had to suction out the tube.
Kolb
The change enabled him to return to the house where he had lived with the help of family and foster helpers.
It wasn’t Kolb’s first or last foray into disability activism. He became one of the leading advocates in Nebraska for the rights and self-determination of people with disabilities.
Mary Angus, chairwoman of the Kolb Foundation for Disability Education, said her friend was influenced by his energy, intelligence, and the perspective his own condition gave him. She particularly remembers his welcoming demeanor.
“What he could do with just the muscles in his face was amazing,” she said. “He enriched the world so much.”
Kolb was born with a rare condition known as Werdnig-Hoffmann disease or spinal muscular atrophy that eventually led to quadriplegia.
In a blog post, he wrote that his parents raised him as a normal child and insisted he go to regular public school even though he and his wheelchair had to be carried up and down stairs to attend class.
He then graduated from Kearney State College, now the University of Nebraska at Kearney, as a fully trained physics and math teacher in high school.
In the days before the Disabled Americans Act, he couldn’t be hired as a full-time teacher. But he taught substitute high schools in Kearney and Franklin and taught numerous students from the Franklin area. He has also appeared on a Kearney religious show and taught Sunday School for teenagers.
In the middle of life, Kolb increasingly campaigned for disabled people. He dealt with issues of accessibility and employment as well as measures to help disabled people gain more control over their lives.
“Advocacy is essentially an act of educating oneself and others, not only about their legal rights, but also about the exercise of our right to seek authority over and ability to do the things we need to survive Community thrive. ” he said in a 2015 blog post.
His achievements included a law passed last year to make work and income easier for disabled people without losing their Medicaid coverage. Angus said the move is aimed at setting restrictions in previous laws.
Kolb founded and directed the Kolb Foundation for Disability Education, through which he conducted training and provided information about disabilities. He has also served on a number of public and private policy and advisory groups.
He was chairman of the board of directors of Independence Rising, the former center for independent living in central Nebraska, and a member of the community advisory board of the Monroe Meyer Institute, the Nebraska Consortium for Citizens with Disabilities, the Nebraska Statewide Independent Living Council, of Disability Rights Nebraska and more.
Survivors are his 22 year old wife, Karen Kolb; and his brother Chris Kolb from Lincoln.
Services will be held on Tuesday at 1:00 p.m. at Grace Lutheran Church in Franklin and will be streamed live on the Hutchins Funeral Home’s Facebook page.
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