The first time that I testified in the state legislature in Minnesota, I was ready. It was winter 2009, and I was dressed up in a blazer and nice pants, with pearl earrings and my hair perfectly coiffed. I had spent several days preparing my testimony, in consultation with disability rights leaders. One of them was Anne Henry of the Minnesota Disability Law Center. Another was Anni Simons who is now working for a law firm, but at the time, was working for the Minnesota Consortium for Citizens with Disabilities. They shared policy information with me that I used in my testimony to support protecting the Personal Care Assistant (PCA) Program. Our governor at the time was Tim Pawlenty, and extreme conservative with ambitions for higher-level politics. He catered to the far right, and put the disability services programs on the chopping block. By this time I had worked formally as a caregiver since 1997, making me a veteran from the trenches for over 10 years. If you were to count my informal years, which began with caring for my younger siblings, neighborhood in church families, and relatives with disabilities, I had been a caregiver for over 20 years by this point. My Auntie Ruthe was a big inspiration for me and getting involved in disability work. She passed away in 1998 from complications of rheumatoid arthritis. And when I spoke the words I had carefully crafted for my legislators, she was in my heart. And so were many others I had served in my many years, across several disciplines. Not the least of which, on my own daughter, who by this time had experienced so many medical issues that it was a miracle that she was alive. I had waited for this moment in one way or another my entire life. My attitude was to represent myself, other caregivers, and the people that we are dedicated to. I wasn’t nervous until I got up to the microphone, when I had a few panicky moments, but continued through to the end of my testimony. It was videotaped and shown live on channel Two. And there is a video of it on YouTube. It led to many more opportunities to advocate, including an interview with the Star Tribune newspaper. So without further ado, here is my first public testimony in support of caregivers in Minnesota:
Direct Support Professional Association of Minnesota, President
Public testimony on the Governor’s Budget Recommendations
My name is Bridget Siljander. I am a Personal Care Attendant (PCA), the President of the Direct Support Professional Association of Minnesota (DSPAM). I hold a Bachelor’s Degree in Psychology, summa cum laude, from the University of Minnesota. I’d like people to know that I am a highly-educated PCA.
DSPAM is opposed to a number of the Governor’s recommended budget cuts to Disability Services and PCA services. My comments today will focus on the proposed changes to the PCA program. I am the face and voice of one of thousands of PCAs in Minnesota. You probably won’t see many of our faces or hear many of our voices because we are a marginalized and underrepresented workforce. DSPAM members believe that the PCA program can’t afford cuts and PCAs can’t afford reductions to wages.
I have been a PCA for over 10 years. For the last 8 years, I have supported a dear friend who, before a severe Multiple Sclerosis relapse that resulted in complete quadriplegia, was the Senior Director of Development at the University of Chicago.
As a PCA for over 10 years, I have barely survived on my wages while working numerous split shifts over the course of exhaustingly long work days, and spending hours daily in my car driving between consumers, sometimes up to 4 hours per day. Though I toiled, and for a period of two years, worked split shifts 7 days per week, I still needed subsidized housing, public assistance benefits, trips to the food shelf, and Minnesota Care for myself and my daughter. It was humiliating for someone who prides herself on her self-sufficiency. I don’t like getting public assistance. In fact, I hate it. But, I was forced to make up for the gap between my earnings and the basic cost of living. I recall many times when preparing food for a consumer that I wished I could afford groceries. I want you to know that I am proud of my work ethic and of the standard of service that I provide. I am good at what I do and through my advocacy, am raising awareness that this work demands intelligence, talent, skill, independence, and problem-solving abilities.
—–CUTS MORE than $85 million (state + federal Medicaid) in Fee-for-Service PCA Services from January 2010 – June 30, 2011. Cuts rise to $75 million (state + federal) for 2012 and $81 million (state + federal) for 2013.—Minnesota Consortium for Citizens with Disabilities
The Governor’s Recommendation cuts more than $85 million in Fee-for-Service PCA Services over two years, rising to $75 million for 2012 and $81 million for 2013. These dollars will be removed from the economy. Since this industry is highly labor-intensive, many of these dollars will be taken out of the pockets of PCAs and other DSPs — people already struggling to pay for transportation, housing, food, utilities, and healthcare—people who put their dollars right back into their local communities. This seems contrary to efforts to stimulate the economy, empower individuals, and support each other.
DSPAM opposes the governor’s recommendation to eliminate eligibility for MinnesotaCare, GAMC hospital only, and transitional MinnesotaCare for adults without children. Because DSPs are low-wage workers, are more likely to take advantage of Medicaid-funded health care, and already lack access to affordable health care, this recommendation would further compound this problem. PCAs may provide health care services as a part of their job duties. Yet, they themselves are largely denied access.
DSPAM opposes limiting the number of hours per month a PCA can work to 310 hours. This limitation will take away wages from PCAs who are already providing services in community- and home-based settings. Perhaps a PCA is a live-in aide, or assists multiple consumers; this limitation would mean that consumers would be forced to recruit additional staff.
DSPAM does support the governor’s recommendation requiring PCA staff to be trained on: working with people with disabilities, infection control, mandated reporting, role of the PCA, basic transfers/lifting, changes in condition and HIPAA.
DSPAM supports requiring standardized trainings for agency owners and PCA staff. But, DSPAM does not support additional training requirements without increases in wages. Requiring additional training could decrease competitiveness of PCA wages when the majority of DSPs do not earn a livable wage.
The proposed budget changes to Personal Care Assistant Services will take money away from PCA wages and this is an unacceptable solution to balancing the budget.
Testimony PART II- includes suggestions for language modification: this testimony was given at a later date during the same legislative session.
During the time that I worked full-time as a PCA, and took on as many hours as humanly possible, I still qualified for public assistance benefits, lived in subsidized housing, and regularly visited my local food shelf. This just doesn’t seem right to me when my service over the last 10 years has allowed a great number Minnesotans to live in community- and home-based settings. And, in my situation, I could not have afforded any cuts to my wages.
I believe in the importance of the PCA role in our communities and I am proud of my work ethic and my standard of practice. I seek to raise the bar in everything that I do.
Being a PCA or another type of Direct Support Professional ought to be considered a profession that people are able to commit to and feel proud doing. Other jobs in the community service sector are: police officers, nurses, teachers, and public officials. PCAs and other Direct Support Professionals should be elevated to the same standing in society with proper regard.
I would like you to consider adopting new language in the Department of Human Services and in State Statues to recognize all support staff as Direct Support Professionals (DSPs) as the primary and preferred title. Referring to support staff as “professionals” challenges social perceptions, empowers the workers and raises expectations and accountability across the board.
This is why my suggestion today is to adopt language that is inclusive and respectful toward PCAs and other Direct Support Professionals. My organization, the Direct Support Professional Association of Minnesota, the University of Minnesota’s Research and Training Center on Community Living, the Metropolitan Center for Independent Living, and others have chosen to categorize all persons in a direct care and support role as Direct Support Professionals. This is our umbrella title that encompasses a multitude of job titles, such as PCA, Home Health Aide, Employment Specialist, etc.
One of the problems in the direct support field is the pervasive fragmentation that exists, and this is exemplified in one way in the estimated 100 different job titles. This situation confuses who and what is defined as direct support. And, this leads to disempowerment and misinformed decision-making that affects support staff.
DSPAM believes that professional recognition leads to higher job satisfaction, which means that staff will stay longer with consumers and turnover will decrease. Turnover in the direct support field has been studied and evidence has shown turnover rates as high as 75%, a disturbing number when we realize that this instability affects the health and wellbeing of consumers of Disability Services and other programs, those who are most vulnerable and whose alternative is institutionalization.
My final suggestion today is: The current list of providers needs to be updated and available on-line. It needs to indicate which agencies are profit and non-profit. It needs to indicate years in service, average consumer case load and average number ofDSPs employed. It needs to allow for a consumer and DSP rating scale sothat people who actually access the services can inform others who arelooking for an agency.Thank you for the opportunity to share my opinions and suggestions. I look forward to working with you during the next session toward the improvement of PCA Services and direct support services.
Direct Support Professional
Direct Support Professional Association of Minnesota, President
Direct Care Alliance, Direct Care Worker Specialist
University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration, College of Direct Support, Freelance Curriculum Author