Becoming an Advocate
I started this blog as a response to my experiences as the parent of a child with a disability. I was a journalist and teacher in Denver. It was natural for me to use my skills to reach out to others with these challenges. I knew how difficult it could be to sort out disabilities and find remedies, and I had some success working to get appropriate services for my child and others. I also had some failures that were painfully instructive. Ultimately, I’ve become an advocate working to support mentally disabled people in Colorado and their families by reforming the processes through which they access services.
An Obstacle … and a Win
My first experience with Advocacy happened when I asked for help with the cost of a treatment program for children. The treatment was necessary, but had been declined by my health care provider. I had offered to work with the hospital providing the treatment to encourage the insurer to cover the necessary treatment. Instead, I found myself in front of an Administrative Law Court judge along with a City Attorney, who was ostensibly my challenger. Both the judge AND the attorney helped me… because I asked… and made the case for assistance. We received retro-active Medicaid which paid the cost of the expensive program.
If a Policy Sounds Wrong, You Might be Right
The next experience I had with Advocacy followed my participation in a course offered by the National Alliance on Mental Illness. At the suggestion of my child’s doctor, I took a “Family-to-Family” course offered by the Denver chapter of NAMI, for which I am now a volunteer. The course was designed for family members of people with mental health challenges to share their experiences and to learn more about how to help their loved ones. I told the group about an experience I had trying to secure adult Medicaid for my Medicaid-insured child who was then going to be 18.
Ten years ago in Colorado, children who had Medicaid routinely lost it when they became adults. My efforts to avoid this included something I called “camping” at a human services office. I would bring a book bag to the building and ask to see supervisors in the area of Medicaid. I read for much of a day, and was prepared to be there for more than a day if need be. The information I received was disheartening and didn’t seem right. An administrator told me that while I had her sympathy, there was just nothing available in Colorado to extend childhood Medicaid.
An attorney, who taught the NAMI class, suggested I talk with attorneys at the Colorado Center on Law and Policy (CCLP). It turns out the state was obliged to look for a way to extend childhood Medicaid. This came at a time of Medicaid expansion in Colorado and elsewhere. The Governor’s Office was interested in our case, and my 18-year-old child got adult Medicaid, along with many other young people. Another victory!
A Bad Form Leads to Policy Changes by the State
By now I was using some of the insights I had gleaned working to support my own child to support other people with disabilities. The next time I was struck by the unsoundness of a process for getting services for a disabled person, I went back to the CCLP. I chronicle the story in my entry “How A Group of Advocates Organized Around A Printed Form That Didn’t Work To Change the Way Disabled People In Colorado Access Services.” I was helping a young man with serious mental illness try to access the state’s Aid to the Needy and Disabled Program. We had two problems. First, his provider at a public mental health center was unwilling to sign on to language on a qualifying form (which Colorado borrowed from Social Security documents) indicating that he was “totally and permanently disabled.” The issue was that by default, he was determined to be “temporarily disabled.” As such, he was given a matrix of questions on which he could not score enough points to secure the benefit because he was young, graduated from high school, and spoke English. Many other young people with severe mental illness would also not qualify using the form.
As a result of the work of an Advocacy group led by the CCLP, the matrix was dropped and the form was changed. I was hooked, …not only on the benefits of Advocacy in securing much needed benefits for disabled people, but on the ability to make the system work better for disabled people in general; to support them to work or volunteer; to provide support to secure federal assistance for them; to keep them out of jail; and to get them the educational services they need as children to become more independent adults. This blog provides information for the families of disabled people to help their loved ones, themselves, and our larger community. Working together, we can make change that makes sense, helps people become more productive, and supports people with disabilities and their families in ways that make our community stronger.