With spring’s new growth comes the end of the legislative session, and as usual very little has been done at the Minnesota capitol. In recent years, it is always a waiting game; each side is waiting to see who will fold first. Who’s going to cut taxes and who will get blamed for no tax cuts? Who is going to vote for the state’s highest priorities and who will vote only for what has the general public’s current attention, to get themselves re-elected? If you’re not there almost every day you know only a small part of the truth, since the news media relay so few of the real facts, the full and truthful details. The general public that calls for spending reductions does not always know the ramifications of not spending money today. Far too often, those budget cuts that look so good in the short term cause bridges to collapse or prisons to have space and staff shortages or Minnesota to fall far behind in public transportation. They also mean real trouble for home- and community-based healthcare support programs.

I am afraid that more people with disabilities will die before legislators increase funding to home- and community-based programs. I am worried that it is going to take a catastrophic incident before the general public demands the legislature do something. But even then you never know. It seems pretty obvious to me that we need to increase our mental health care resources for school-aged youth, but recently a suburban city council refused to vote in favor of building a multi-bed psychological health facility for youth.

In March, one state legislator told disability advocates that his highest priority was to pass into law funding to help stop the crisis in home- and community-based services. However, it is not a priority at the end of April. I know that it is not up to one legislator or one committee chair to make sure something gets funded, but people are actually dying. I have seen legislators crying when they hear testimony about how terrible it is in the community to find good caregivers. They are appalled at stories of people sleeping in their wheelchairs because no one came to put them to bed, or hearing stories about people staying in bed for a long holiday weekend because they could not find anyone available to help them. They’ve heard reports of people having to have amputations or dying from infection from untreated wounds and pressure sores. They know that people with disabilities have been diagnosed with PTSD because of the worries and stress of not having caregivers. Many people are struggling every weekend to find caregivers, and they often need to ask people to work long stretches of time because another caregiver got sick and there’s no backup or relief staff. Newly hired caregivers are being trained at agencies’ cost, and then they often lose their investments in PCAs, when someone recently taught never shows up for even the first shift on their own. Family relationships and friendships are being destroyed because of overwork and underpayment. PCAs are leaving their caregiving jobs to take jobs in retail for an increase wage of 25 cents an hour.

In another newspaper, the author quoted a news celebrity who said, “Minnesotans have a great deal of goodwill. You can shame people into doing the right thing. I do not know if you can say that in most parts of the country anymore.” It is difficult to think that a civilized society needs to be shamed into doing the right thing. Are they saying that society should not be obliged to help provide for those who cannot fully care for themselves? What if society were not so much obliged as obliging? When I look up obliging in the thesaurus the words helpful, kind, considerate, agreeable, willing, cooperative and accommodating come up. I do not know if any of these words are in the Bill of Rights or the U.S. Constitution, but they are certainly implied in the Golden Rule and the rules for my life and describe the kind of community I want to live in.

If you get a chance before the legislative session ends, call your legislator and ask them to support the PCA program and help solve the crisis. Let them know that they can’t wait for later, because there is no safe “later.” The crisis is happening and if we do not do something, the most vulnerable people in our communities will be hurt and most of the hurt will be invisible—except for the occasional sad story on the news. We don’t need tears and head-shaking; we need better rates for the state’s caregiving programs. We have to make a change now.