After focusing pretty hard for the last few months on home-based care and PCA reimbursement rates, it’s probably no surprise that I have a couple related events to talk about this month. One of them is the Direct Care/Workforce Summit held by the Minnesota Department of Human Services (DHS) on July 26, the same day as the ADA anniversary. We’ve got photos on pages one and nine on the ADA celebration. Another thing I’d like to share a bit about is the July 28 National Council on Disability seminar at the Radisson Blu in downtown Minneapolis.

The workforce summit was a bit of a letdown for me. Loren Colman, assistant commissioner for Continuing Care for Older Adults at DHS, kicked off the day and introduced us to four speakers: two people with disabilities who spoke about the difficulties in finding reliable, quality home-care workers and two others who spoke about demographics and technologies. Susan Brower, the Minnesota state demographer, had some interesting numbers concerning Minnesota and the need for a larger direct-care workforce in the very near future. The state predicts that the current home-care workforce of 135,000 will need to increase by more than 40 percent by 2020. How will that happen in four years? However it does, it is necessary, because the state already has more than 800,000 residents over the age of 65, and 612,000 Minnesotans have a serious disability (many of them are also seniors). Currently 11.3 percent of the state’s 5.4 million people have disabilities that require direct care. She also shared some statistics on who is likely to be a personal care attendant, describing the current workforce by age, sex, and number of years they’ve worked as a direct support provider.

Another individual spoke about promising support technologies, but for me that didn’t seem relevant to really enabling independent living or to resolving the crisis. The technologies described seemed as though they might possibly help in a group home or nursing home or some kind of facility. But remember, the goal for most people is to stay out of institutional living. You can’t request physical help using remote technologies from someone who may be across town caring for someone else in their home. I don’t believe that a lifeline pendant will be of much use to a lot of people who have the need for PCAs.

The summit made time for small group breakouts, and I heard from other attendees that their group interactions were productive, with good ideas and possible solutions that could be implemented pretty quickly and easily. My group seemed to sway off onto other topics related to independent living, and didn’t really seem to address any solutions for the worker shortage problem.

I think many of us are so anxious about the threat of losing independence that it can be difficult to think about this worker shortage as a public economic issue. It’s a very personal threat. While I don’t think we can use this as any kind of excuse, what psychologists call “learned helplessness” is a risk for many people with disabilities, myself included. It has to be considered in resolving the crisis. Many of us are afraid to speak out about poor and inconsistent care to our PCAs, to our case managers and to our provider agencies. We are not willing to lose what we have if we ask or expect “too much” of anyone. When we don’t expect too much we don’t get too much. That’s a pretty sad statement, considering Minnesota’s Olmstead Plan requires the state to allow people with disabilities to live and enjoy life in the least restricted environment of their choice.

On July 28 the National Council on Disabilities had their annual conference here in Minnesota and I was asked to speak about the direct care workforce. I was extremely lucky to be on a panel with two fabulous speakers who presented ahead of me. Sheryl Larson from the University of Minnesota’s Institute on Community Integration, and Jessica Lehman from the San Francisco Senior Action Network, provided research-based perspectives. Lehman spoke about the importance of mutual respect among clients, agencies and caregivers, and how the shortage of workforce is affecting the health and livelihoods of Californians with disabilities. It’s comforting and discouraging at the same time to know that Minnesota is not the only place where the home-care shortage is critical. Of course, it is happening all over the country.

Larson presented information from her research on finding, keeping and ensuring the competence of direct service workers. It was a very strong presentation and if you get an opportunity to view her research, you’ll find it interesting. (I’ll contact Larson and the Institute on Community Integration and see if we can post some of her work on the Access Press website). She spoke very expertly about the demographics of the people involved with direct service workers and the workers themselves. According to her references, there will be a 25 percent increase in the demand for direct support workers by 2024. A staggering statistic is that 51 percent of direct service workers are also relying on public assistance and 24 percent are without any health insurance. Personal care attendants’ average hourly wage is just $10.09, and direct support workers in institutions are making only $14.77 an hour. In 2012, the average turnover rate ranged from 30 percent to 43 percent and the vacancy rate was 3.3 percent to 17.2 percent. These are terrible numbers. How can we expect continuity and competence in care providers when the turnover rate is this high? How can provider agencies stay afloat if they’re training new employees this frequently? What’s worse is that these numbers are from 2012. They are certainly higher today.

I’ve learned that Medicaid Home- and Community-Based Services has its own internal rules. The rules from 2014, like Minnesota’s Olmstead Act, require that people with disabilities be integrated into the community at a level of independence of their choice; to have full access to the greater community and to engage in the community while being provided the services needed. Each individual, Medicaid says, should also be offered the opportunity to seek competitive employment in an integrated setting and control their personal resources. We can’t do this without qualified caregivers. We all seem to know what we need to get qualified caregivers: a livable, competitive, and professional wage.

Minnesota’s new Olmstead Plan reinforces these rights and requirements, so it seems like someone is not following the plan. Unfortunately, it’s our legislative leadership. They haven’t been funding enough for the state to be in compliance with these rules. DHS is not completely innocent, either; just last year we found out that DHS had $1 billion of unspent money that should have gone to the home- and community-based service programs. Someone asked me, respectfully, why we need more money for this if DHS is sitting on $1 billion they were supposed to spend on services. Why can’t they use that billion on reimbursement rate increases now? What could I say to that question other than that the money was designated for a particular use? The person responded, there is a crisis in the community; reallocate the money to slow down the care-provider crisis throughout the state, now; approach the legislature next session to earmark appropriate funding. I wonder why the state’s attorney has not looked into this or why there hasn’t been a class-action suit filed concerning compliance with the Olmstead Plan.

I hope everybody has been thinking about your favorite local hero for this year’s Charlie Smith award. We need you to send your nominations in for the 2016 award. There are plenty of people out there who are deserving for their work with the disability community. Send a nomination in by 5 p.m. Monday, August 15 telling of someone you know who consistently goes above and beyond what’s needed to advance the lives of individuals with disabilities. The board will be going through the nominees at its August meeting so that we can announce the winner in the September paper.

Stay cool, and see you at the Minnesota State Fair!