The 2016 Minnesota legislative session was a disappointment. It does not seem like anything was voted into law that will be helpful to Minnesota’s senior population, disability community, working poor or other disenfranchised groups. Oh, there was a little funding for staffing at the state hospital and a few other mental health provisions that were needed and positive, but our legislators could have done much more.
Best Life Alliance didn’t get its requested five percent reimbursement rate increase for home care workers, although not from a lack of hard work or commitment to their proposal. No funding at all was allotted to relieve the critical staffing shortage in home- and community-based living programs.
I agree with the National Alliance for Direct Support Professionals (NADSP.org) that the staffing shortage is caused by the poverty level reimbursement rates paid by the state for home care workers. Even with many legislators agreeing that there is a crisis that desperately needs funding increases for staffing, we didn’t get action. The longer we wait, the more it will cost to resolve this problem. The risk is that the cost will be highest in peoples’ lives, as vulnerable individuals will lose their ability to live and work in the community. Eventually the cost will be measured in increased hospitalizations and institutionalizations, resulting from a lack of community care and the inability of policymakers to accept responsibility to their promises to vulnerable American citizens.
This is not, by the way, just a Minnesota problem. It is happening all over the country with legislators and policymakers turning a blind eye. NADSP is having its second annual conference in Atlanta, GA this weekend. This national organization has recognized the critical issue and the need for serious funding to solve the problem. They sum it up well:
The United States is at a critical juncture where workforce development, education, and disability service systems must implement strategies to increase the capacity and quality of the direct support workforce. Action is necessary if we are to provide the support people with intellectual and developmental disabilities [IDD] need to live and participate in their communities. Self-advocates and family-advocates have fought hard for decades to ensure that supports provided are person-centered, increase inclusion, and lead to valued lives for people with IDD. Researchers, practitioners, and policy-makers have recommended recruitment, retention, and education strategies to address this critical workforce need, however, they have yet to be sufficiently funded or brought to scale. If the charge to address the workforce crisis is not acted upon, the entire disability service system is at risk of going back to days of institutionalization, segregation, and stigmatization, turning the clock back on decades of advocacy and disregarding the voice of people with developmental disabilities across the country.
I just got a call from a person who worked in the Courage Center residence in the 1980s. She was wondering if I knew that a member of our community had died recently and whether or not he died from lack of home care staffing. She told me he had been staying up several nights a week, unable to sleep, not knowing if a morning staffer would be coming to help him out of bed. All of this is unnecessary and sad, and the anxiety that these situations cause an individual is totally unacceptable. I know first-hand how desperate and helpless so many feel in what seems to be a losing battle.
The lack of support communicates one thing clearly: people who care for our most vulnerable must do it at poverty-level wages. And those who need that care, who must depend on social services, should accept being in dire poverty, too. The Medical Assistance income and asset rule requires a person with a disability to spend-down their income to $792 a month, and to
hold assets no greater than $3,000. Incidentally, a person without a disability is eligible for the same program with a spend-down of $1,317 a month, and no asset limits. However, for some odd reason, a person with disabilities is required to spend-down $525 more a month than their able-bodied peers. It sure does sound like grounds for a discrimination suit to me. Why is there a difference?
If you are not familiar with a spend-down, let me explain. Any money a person with a disability earns, over the limit of $792 (or if you are someone without a disability, $1,317) has to be spent on medical bills before MA starts paying the medical bills. It’s similar to a deductible on your car insurance, except that it means you have $792 a month for all other costs of living.
Some days, it feels like the label “people with disabilities” is used to make it easier for the general public to accept the blatant discrimination—as though we are a class of people who are just different in a way that justifies discrimination. No one wants to think that people with disabilities are discriminated against, but health care and social services law is forcing us into poverty and dependence in a discriminatory way. It is a sad truth, and few want to recognize it or do anything about it. It is hard to hear grand statements and rhetoric about how “inspiring” we are. We are supposed to be so uplifting to legislators and politicians when they make promises, but behind the curtain, it just feels like a con-job.
Right now, in mid-June, while the Minnesota Legislature fights with the governor about finishing their work, I think about the soccer stadium funding and the transportation and university budgets that are in the headlines. But for me and so many seniors and people with disabilities, the government, its bureaucracies and policy analysts continue to cloak decisions about spending in statistics that distance them all from the reality of what’s actually happening. Their decisions are really affecting people who are already living on the edge, people who soon will be forced to live in nursing homes or the state hospitals of the pre-1960s.