I am excited to be co-chairing the Best Life Alliance, formerly The 5% Campaign, this year. I am grateful to so many of you who helped advocate for a rate increase for Home and Community-Based Services (HCBS) for people with disabilities and older adults over the last few years. But our work is not done!
As you may know, the increase in 2014 was a step in the right direction. However, a serious workforce crisis continues and funding has not kept up with rising costs. The Best Life Alliance is energized and focused on one goal: asking lawmakers to prioritize funding in 2016 to address the crisis and support reforms so people with disabilities, older adults, and the caregivers who support them can live their best life. The coalition supports reforms that promote quality services, choice, and individualized options for older adults and people with disabilities.
Why the name change: The new name will allow us to transition from a short-term, “one ask” campaign to an ongoing HCBS coalition. There is a great energy, positivity and broad impact behind this name. It speaks to everyone touched by services: the best lives of people served, caregivers and family members.
My family’s story: As the mother of a 33-year-old daughter, Sarah, who has severe disabilities and lives at a group home in Mendota Heights, I see firsthand how the workforce crisis is affecting services. Sarah suffered a severe brain injury from viral encephalitis when she was just five years old. Sarah can no longer speak, has a seizure disorder and is partially blind. She depends on others to feed, dress and bathe her, and wears a helmet to protect her from falls. In spite of so many challenges, Sarah is a very happy person.
As a family, we took care of Sarah at home for 25 years with the help of direct care workers. One worked with us for 17 years and one for 24 years, so we know the positive impact of loyal, caring and skilled direct support professionals. A rate increase for HCBS will help provide better wages for the direct care workers who do these skilled and important jobs. Quality staff are needed to make sure that people with disabilities—like my daughter Sarah—and older adults have the best lives possible.
Need for quality, stable workforce: My daughter lives in a home with five other people who have high needs. Their staff must be highly trained to meet their medical needs including being proficient in the use of lifts, standers, tube feedings and medications. They must constantly monitor the safety needs and be adept at understanding body language of the individuals who can’t speak. In addition to a highly trained and caring workforce, this also requires continuity in staffing.
The staffing situation at Sarah’s house, like so many others in Minnesota, has been impacted by especially high turnover. Some describe this as the worst they have seen in two decades. Recently, I called the house and talked to a staff member who was working her last day. She cried as she told me how much she would miss the people she supports. But she was leaving due to the high staff turnover, difficulty in filling work shifts, and continued low wages.
Community-based services increase independence and allow people to be active participants in their communities. They promote health and safety, foster skill development, provide job coaching, meet medical needs, allow people to volunteer, and more. But quality care depends on consistent, quality staff. Without reasonable compensation for direct care workers, it is more and more difficult in this job market to attract and maintain staff. This will only get worse if we do nothing. We also know that turning reforms, including those laid out in Minnesota’s Olmstead Plan, into reality will require a skilled and stable workforce.
Ways to get involved: With a projected surplus in Minnesota’s budget, now is the time to take action. We know that legislators will have many priorities during the short 2016 session that begins on March 8, so it is critical that we continue to speak out to make a rate increase a priority. You can help.
• Learn more on the Best Life Alliance webpage
•Like the Best Life Alliance on Facebook and follow @BestLifeAlliance on Twitter.
• Contact your legislators about why a rate increase in 2016 is important to you, or write a letter to the editor of your local newspaper.
Thank you for joining us in advocating for a rate increase in 2016 so that people with disabilities and older adults can live their best life.
Pam Gonnella, and Steve Larson, are co-chairs of the Best Life Alliance, a nonpartisan coalition of more than 130 Minnesota service providers, caregivers, self-advocates and families advocating for Home and Community-Based Services.
