By Marian Baldini
In 1977, I entered the Intellectual and Developmental Disabilities (IDD) field as a direct care worker (direct support professional) at KenCrest.
At my group home, there were three teams working with six teenagers. Of the six staff, all but one possessed a bachelor’s degree, and I had just finished my masters. During my time as a direct care worker, there was no training and no regulations regarding operating and maintaining a safe space for those we cared for; what we did have was a strong set of values for teaching and learning.
We taught people under our care an array of life skills in the few months we stayed in our jobs, and each of us felt bad when we left our positions for new opportunities. Like many in the direct support industry, we left our jobs for better pay, benefits, education, and advancement opportunities. Little did I know in 2015, I’d return to KenCrest as their CEO and President.
In the many years in between, the advocacy for direct care staff has been remarkable and worthy of recounting. By 2007, we renamed these workers “professionals.”
The rebrand paved the way for an annual, national appreciation event, Direct Support Professional (DSP) Recognition Week, to raise awareness of the profession and the needs for improved financial support.
While the DSP workforce has been studied, the title is not adequately recognized by national data analysis. We know for certain that we do not have enough qualified candidates to meet the demand for services; the pay is low, the turnover high for those we do employ.
There are movies documenting the work performed by DSPs from their perspectives, as well as the millions of families who depend on them. Several organizations have created curriculums to teach the skills needed for the DSP position and even offer voluntary accreditation. In a few countries around the world, governments have mustered the funding to offer better pay for improved credentials.
Countless hours have been spent by associations, agency executives, and staffers to increase awareness with state legislators on improving Medicaid reimbursement rates to increase DSP wages. In the Intellectual Disabilities field, the state and federal government are still the only payers for Medicaid-funded.
While many solutions have been offered, each solution requires pumping more money into the system. This year, states are wrestling with this challenge and many more created by the pandemic; the competition for state budget funding is just—if not more—steep.
So here we are again, a month after wrapping up the latest DSP Recognition Week (Sept. 13-19, 2020), and we are still sending the same message: that the IDD industry does not have enough staff to support the needs in the community system.
Turnover has hit a nationwide high of 40 percent, and at the provider level, vacancies are running 10 percent to 20 percent. Staff are more often than not, working two jobs or excessive overtime to make ends meet.
And questions about the quality of those who deliver service rise and fall as we struggle to onboard, and train a workforce which must acquire competency on the job.
If state legislatures are not going to increase Medicaid funds in the system to raise credentials and pay to retain staff, then it’s time to look at this differently. It is simply unproductive to continue to complain. Let’s put our heads together and put all possible ideas on the table.
Can providers change service models to refocus our efforts on keeping individuals with their families and giving families better supports? Can we expand self-directed models, where individuals with support direct funds in creative ways to meet their individual needs and hopes?
If the funding and flexibility were increased in these models, would individuals be better supported to have meaning-filled lives, grow in independence, and further their contributions to their families and communities?
Can the state improve the vocational rehabilitation (employment support services) funding so that someone can reengage once placed to create a career ladder, a way to get help to get the next better paying job? Can they reward employers for taking a chance on hiring?
Can providers expand the knowledge of technology to support independence; help individuals rely more heavily on technology devices (like many of us do already) to prompt them to complete a task, do it more independently, and reduce their reliance on paid help?
There are solutions, it’s time for us to work together as a community —individuals with disabilities, families, providers, and government—to try another way. It’s time to remember that every person with an intellectual disability deserves a meaningful life, and so do the Direct Support Professionals who support them.
Marian Baldini is the President and CEO of KenCrest, a human services and early education agency that supports more than 12,500 individuals throughout Pennsylvania, Connecticut, and Delaware. Recognized as one of The Philadelphia Business Journal’s “Most Admired CEOs;” Marian has over 40 years of experience in the human services field as a fierce advocate for true inclusion for those with intellectual disabilities.