July 26 was a big day in the disability community. We had the 28th ADA celebration at the Science Museum of Minnesota, with a theme focused on mental health. Once again the celebration was well attended and there was a plethora of entertainment. The Sam Miltich and Friends band played amazing jazz music, and Sam also shared an outstanding introduction about himself and his struggles. Adina Burke told some awesome stories, and those of you who have seen her know the creativity of her storytelling. The keynote address was given by Marya Hornbacher, author of several bestsellers. Wasted: A Memoir of Anorexia and Bulimia, her first book, was highly acclaimed and has been updated once since its initial publication in 2014. Even before the latest version, it was a million-seller translated into many languages. Her other books have been very well received, and all have to do with disability.
Also on the 26th of July, the Eighth Circuit Court denied the Department of Human Services’ request to lift the oversight of federal officials over DHS’s progress in fulfilling the court’s orders on implementing the Olmstead law. Many people in the disability community see this as a positive ruling, demonstrating that the court doesn’t believe DHS is putting enough effort into the Olmstead plan to make it a reality anytime soon without oversight. Basically, the Olmstead plan states that DHS will protect people with disabilities from abuse and neglect, and provide person centered planning and basic supports and services that allow everyone with a disability to live in the community of their choosing.
The Olmstead Plan Subcabinet met on the 23rd of July to discuss the plan’s progress. The major problem in communities is the PCA shortage, or the shortfall of state funding for supportive services in the community. Jeff Bangsberg and Linda Wolford made a presentation to the Subcabinet. Their PowerPoint highlighted the need for a truly out-of-the-box look at the PCA program, and they made the point that the state legislature cannot continually underfund the program and expect the Olmstead plan to become a reality in our state.
As I’ve said so many times, it’s becoming a full-time job to find the staff to maintain independence in the community. It’s getting to the point where people can’t work because they can’t find staff without spending much of their day marketing for assistants, interviewing people who never come back, and making daily adjustments in schedules, to ensure their own independence. Meanwhile, the Legislature is funding organizations to help people with disabilities find jobs with a competitive wage. Sounds great until you don’t have a way to get out of bed, or sufficient help to maintain appropriate hygiene for the workplace. Employment incentives are of little use for people who need help to get to the job and, in some cases, on the job. Granted, the funding for these programs would not be enough to totally solve the crisis of providing personal care for people with disabilities, but it would be a huge step forward in lessening the burden and stress for people trying to maintain their health and independence.
We are past the time of taking baby steps to make the Olmstead plan a reality and to solve the PCA crisis. It can’t be long before more people are institutionalized or worse. Many people are in the serious predicament of not knowing how they should proceed, every morning, day by day. I know people are getting worn out by the stress and confusion of not knowing how they are going to get by the next day. People are afraid to check their mail, not avoiding an overdue bill but fearing a 10- day notice from their PCA agencies that the agency can’t fulfill their needs any longer. For those with complex care requirements, it’s extremely difficult not to know who is going to put you to bed, who is going to get you up or if you’ll get a shower and checked to prevent new pressure sores. It’s just as difficult to know that the people who do come to work to do these tasks are often not qualified or lack the experience to know what to do in an emergency situation. As one person testified at the Subcabinet meeting, they’re hiring anyone because there are no opportunities to hire qualified people for the help.
You have heard all this from me repeatedly, but it’s because the situation is going from bad to worse, and there’s no relief in sight. I would like to invite some legislators to walk or roll a mile in my shoes. These complaints aren’t what I want to be writing about, but the worry that I hear from so many others in the community, and that I feel myself, has to be expressed. A good society, like a good family, wants people to be strong and independent, and helps them get on their feet so they can do as much as others. On our feet or in our chairs, that’s what we want.