Editor’s Column – May 2016

There is a crisis in the disability community and it has been going on for years. About ten years ago, […]

Tim Benjamin

There is a crisis in the disability community and it has been going on for years. About ten years ago, I got an email from someone with a significant disability who said that his staffing issues were getting out of control, and he wasn’t sure how much longer he could go on. This person was in a real crisis situation. He had just gained his independence, moving out of his hometown nursing home and into the Metro area where he could take advantage of all the community resources, education options, transportation and housing accessibility, etc. He could not go back home, and he could not maintain his independence when staffing was so unstable. His overnight help had not shown up the previous few nights, and he had laid in his bed each night with no help getting to the restroom, no help getting water, no help getting repositioned or dealing with anything else that might have come up. This gentleman is still facing these problems, and more and more people like him are struggling with home care staffing issues.

Over the years, dependency without support has created a sense of learned helplessness for many in the disability community. Too many people are in fear of not getting any of the care they need if they speak out. For too many, persistent attempts to control the uncontrollable become too difficult. Hope for the right public policies has its limits; wishful thinking about better luck with the next agency or next PCA is not a sufficient strategy. For some, believing there is nothing can be done to change the situation leads to resignation: “This is the way it is.”

What’s so difficult is that there are many people with disabilities who are employed and pay taxes, who are assets to their community, and are now, because of changes in federal health care law, facing the real potential of having to give up their jobs and their autonomy. These rule changes are compounded by a workforce crisis because of low wages and high demand for personal care assistants. If this catastrophe is not resolved, we may see hundreds or thousands of productive citizens having to move from the community into long-term care facilities—where the next catastrophe could occur.

What was the point of the ADA and in Minnesota, the Olmstead Plan, creating laws for community integration, for educational and job opportunities, transportation, accessible facilities and public infrastructure, when people with disabilities don’t have staff to get them out of bed? Why were all these millions spent in the first place?

Now in this crisis we are starting to see home care agencies hesitating to take on clients with high needs because it’s so difficult to staff and make a meager profit. Agency administration and staff training have become incredibly costly because of rules and regulations established to eliminate perceived fraud in community living. Once trained, PCAs resign at high rates, and why wouldn’t they when they can make more money delivering Jimmy John’s or working at Burger King with very little training and no one’s life in their hands.

The most vulnerable in our communities are being compromised because they cost too much and the state and federal government won’t sustain their supports. So again, what was the point of any of the work over the last 25 years, to give up on it now?

The greatest kudos go to so many of our lobbyists, advocates, allies and organizations who try to create a better world for all of us, but another round of “5% pay increase” legislation was proposed to bring the wage scale out of poverty level and it wouldn’t even be heard by this year’s committees. It was said to be way too costly, over the governor’s budget, so it was just buried. Nobody wants their parents to go into an institution or nursing home, and no parent wants to go into a nursing home, but the authorities continue to provide funding for them. Is that then the environment we really want for our young adults?

Nobody should be forced out of community life to go where they don’t want to be. In fact, the Olmstead plan requires the state and the federal government to allow people with disabilities to “enjoy life in the least restrictive environment.” But what does that mean, if it’s not enforced or if our government and communities are not willing to back it with real change, with real tax investment.

People do not choose disability. But for those who live with disabilities, social supports are needed so that they can thrive and live their lives doing work that benefits the community. What will it take? How many people have to be hospitalized or die before we recognize this crisis? “Death with Dignity” assisted suicide legislation was dropped in committee this session after some pretty heated discussion. Doesn’t this tell us that the community doesn’t want people to take their own lives, that all lives are valuable? What are people to do? The stress and anxiety is making young people old in a hurry, and older people like me very worried.