As the year (and the decade) ends, I keep thinking about the upcoming legislative session, and even though I sound like a broken record, all my concerns come back to the problems at DHS. Will the legislature fund anything new for DHS, or stay stuck in a round of audits and plans for splitting up the agency, or making other organizational changes? Will DHS get caught up in political battles between the DFL and Republicans? The fact that it’s the biggest department in the state may make it easy for both parties to decide to divide it up. But then what will happen at DHS and the new agencies as they adjust? Not much progress for a long time, I fear.
A friend of mine has been closely reviewing the details of the “Waiver Reimagine” report that DHS gave the legislature in January. This friend, whose son has multiple disabilities, is baffled by how DHS’s numbers appear to be so imbalanced in favor of facility-based care. DHS’s stated goal is that their “budgets…adapt to support people to live independently or in a residential setting.” But it sure appears that one of their funding models allows for paying “residential settings” anywhere from two to four times as much as independent or family-based options. How does that kind of a model support the Olmstead Plan?
The funding seems to be designed to support a model of facilities making profit. Companies that can house a lot of people and charge $160,000 a year for each person may be able to make a lot of profit because of how many clients each of their staff is supporting.
Meanwhile, many home care agencies are going out of business because they can’t make enough money to survive on the DHS reimbursement rates for home care. They can’t make enough money because they can’t find enough workers to work for $12-13 per hour. Home care PCAs provide support one-to-one. Institutions can provide support one-to five or more. They can make a lot more money with fewer staff for each client, but the model pays them a higher rate. So these facilities may be more efficient because of “volume,” but they cost the state more per client.
More importantly, they are the option that people resist most. People know that individuals in a facility have to live with lower expectations. My friend said that she fears her son would be fed by people who would shove food in his mouth, ignore his needs while they play on their phone, leave him in dirty diapers, and never bother to get to know or like him. And they can never make up for the fact that he’s not living with people who love and care for him.
Of course, many would say my friend’s fears are about extreme possibilities, and involve stereotypes. Most people who choose to work in facilities would be offended; they often take personal care jobs because they are caring and supportive and that is their gift. But not all facilities offer an environment where employees are encouraged and allowed to develop their skills and gifts.
Even if the staff at facilities were improved, facilities are not structured to allow their residents to interact fully in the community. Concerns about liability come into play when residents use transportation or go out in public, and so facilities do not encourage or support individuals to pursue their interests outside of the building. Facilities are not made for enjoying time with others, and can be places where family and friends find it unpleasant to visit frequently. They can’t offer individual or flexible transportation, so getting to a job, a movie, a bookstore, or a restaurant to be with friends, is difficult or impossible. Facilities may use a van or other group vehicle to take everybody to Walmart or a special event, but choices become very limited, residents are made to feel dependent, and the community often ends up being mainly the people in your facility.
Gov. Tim Walz recently worked for a day shadowing a PCA doing home care. The story on KSTP-TV highlighted the governor’s understanding of the
importance of home-based care and paying fair wages to direct support
workers. Maybe the governor will inspire others at the capitol to become informed about this critical topic.
There are many people at DHS working hard on their “Waiver Reimagine” initiative. I hope they are being realistic about the contrasts between home and facility-based care. I hope they are re-imagining how to help people live where they are happiest, safest, and best supported.
Of course, the holidays are here, with all their festivities and things going on all around us. I hope you experience some of the real joy that can happen at this season. Steer clear of the corporate Xmas, and stay upright in all the snow and ice. See you in 2020!
By the way, December 4 was the U.N.’s International Day for Persons with Disabilities. I wonder if you’d tell me in the comments whether you were aware of this at all, and whether you feel like it was like any other day in the year. Maybe the time will come when every day is a day for persons with disabilities.