Direct Support Professionals (DSPs) provide daily support to people with intellectual and/or developmental disabilities (IDD) so they can live and participate in their communities as friends, neighbors, coworkers, students, family members, volunteers, voters, and taxpayers. Increasingly these supports are provided inside the individual or family home, allowing other family members to work and have respite from their daily caregiving. Individuals with IDD and their families rely heavily on the direct support workforce to be reliable, stable, and competent.

The reality is that significant challenges remain in finding, keeping, and training DSPs who support persons with IDD, and these challenges — often labeled a "crisis" — have plagued this industry since the inception of community services. A 30-year crisis is not a crisis; it is a systematic and pervasive failure in the long-term services and supports system in the United States that has created a public health crisis. This failure is rooted in the tacit acceptance that, although not ideal, intense competition for public funding seems to translate to a relatively low-wage workforce and "adequate" services for people with disabilities. That acceptance must be challenged and labeled as what it is: a fundamental lack of respect for people with disabilities and the staff who choose careers in providing support to them.

The Direct Support Workforce

Direct Support Professionals are the paid staff who support individuals with IDD to live their lives and enjoy the same opportunities and experiences as people without disabilities. DSPs support people in whatever ways they need to enhance inclusion and independence. These workers are employed in many types of settings, including family/individual homes, intermediate care facilities, small community residential group homes, community job sites, vocational and day training programs, and others. The direct support workforce includes full-time (66%) and part-time (34%) employees (NCI, 2018). Most employers use the occupational title of Direct Support Professional, yet many DSPs may have different titles including direct support specialist, personal care assistant, habilitation specialist, job coach, residential counselor, family care provider, personal assistant, and others.

A 30-YEAR CRISIS IS NOT A CRISIS; IT IS A SYSTEMATIC AND PERVASIVE FAILURE IN THE LONG-TERM SERVICES AND SUPPORTS SYSTEM IN THE UNITED STATES THAT HAS CREATED A PUBLIC HEALTH CRISIS.

The workforce is predominately made up of women (89%) (PHI, 2011; Hewitt et al., 2008) with an average age of 42 years (PHI, 2011). About 50% of direct support workers rely on means-tested public assistance (Espinoza, 2017). The direct support workforce is racially and ethnically diverse, with 47% of the workforce being white (non-Hispanic), 30% African American, 16% Hispanic/Latino, and 7% other (PHI, 2011). Nearly one-fourth of the direct support workforce was born in a country other than the U.S., compared to 16% of the total U.S. workforce (BLS, 2016). About 45% of direct support workers have completed some college coursework or have a college degree.

Size of the Direct Support Workforce

No occupational title of Direct Support Professional is currently recognized by the Bureau of Labor Statistics (BLS). DSPs are identified within three primary Standard Occupational Classifications of the U.S. Department of Labor: (1) Personal Care Assistant, (2) Home Health Aide, and (3) Nursing Assistant. In 2015 there were roughly 4.5 million direct support workers categorized within three occupational categories (Espinoza, 2017; BLS, 2015). Given the range and variation of job titles assigned to DSPs who work for people with an IDD, some may be miscounted, undercounted or not included in the current BLS classification.

Based on estimates from state-specific studies reporting the number of people who receive services and staffing ratios it is possible to make reasonable estimates of the size of the DSP workforce that specifically supports people with IDD. Recent estimates suggest that in 2013 there were about 880,000 full-time equivalent (FTE) DSP positions dedicated to providing assistance to 1.4 million people. Given that approximately 30% of the DSP workforce is part-time, and estimating that 2.5 part-time workers are needed to fill one full-time equivalency, there were an estimated 1,276,000 DSPs supporting individuals with IDD on June 30, 2013. In order to be able to sustain services at the current levels, given current turnover rates, every year 574,200 new DSPs need to be hired into the workforce. To provide services to the approximately 200,000 people with IDD on waiting lists, an additional 167,001 new DSPs would need to be hired. Given the high growth and demand in need for long-term services and supports, the persistent turnover rates, and a strong U.S. economy, the number of new DSPs that will need to enter the workforce is expected to grow each year between now and 2030.

What DSPs Do

In many ways, DSPs are generalists who have to be able to provide whatever support is needed across a wide range of activities throughout the lifespan of people with IDD. They provide support that promotes informed decision making, understanding risk, exercising rights and choices — empowering people by teaching, modeling, and supporting them in all aspects of life. DSPs implement support for health and wellness routines such as dispensing medications and implementing significant treatments and medical interventions. DSPs assist at medical appointments where they support people with IDD to communicate and interact with a variety of medical professionals about health-related issues. Effective DSPs must monitor for emerging signs and symptoms of illness or disease, and be attentive and energetic in promoting healthy lifestyles. On a daily basis, many DSPs provide assistance for all types of daily living skills, and support the use of assistive technology devices for communication and mobility. Aside from residential supports, DSPs help people find and keep jobs. Of critical importance, DSPs support people by promoting healthy relationships with family, friends, and co-workers. They get people socially connected and support them to participate in social and spiritual activities, education, cultural events, and community functions.

The direct support job is highly complex and requires sound judgment and significant skills that include independent problem-solving, decision-making, behavioral assessment, crisis prevention and intervention, and communication. Many DSPs are often isolated, without co-workers, supervisors or clinical professionals on-site to provide assistance or guidance. DSPs are interdisciplinary professionals because their job duties resemble many tasks typically completed by teachers, nurses, allied health professionals, social workers, counselors, and others. Highly effective DSPs are skilled at developing strong relationships with those they support and their families, and are flexible enough to change depending on each person’s needs and abilities.

Pervasive Workforce Challenges

The direct support workforce is large and is one of the highest-demand and anticipated growth areas in the U.S. Expansion of this workforce is not possible without significant improvements in how they are recruited, on-boarded, and developed. Low wages, unaffordable benefits, limited training and development, and lack of career advancement opportunities make this work undesirable for many people. These challenges impact individuals, families, and community providers who are finding it increasingly difficult, if not impossible, to find and keep high quality employees.

States reporting: AL, AZ, CT, DC, GA, HI, IL, IN, MD, MO, NE, NY, OH, OR, PA, SC, SD, TN, TX, UT, VT. Source: Data from NCI, 2018

Wages and Benefits

The national average wage for DSPs is $11.76 per hour (NCI, 2018). This workforce has actually seen their wages decline over time when wages are adjusted for inflation (PHI, 2015). At $11.76, the average DSP who works full-time makes below the federal poverty level for a family of four (HHS, 2017). Many organizations provide health insurance to employees, but it is far too common that DSPs do not utilize what is offered because they cannot afford the premiums. Most organizations offer paid time off to full-time DSPs, but often part-time workers have no paid benefits. Almost half of DSPs receive publicly-funded benefits, such as medical, food or housing assistance (PHI, 2015). Most DSPs work a second (or third) job to earn enough money to pay their bills (Test, Flowers, Hewitt, & Solow, 2003). Unacceptably low wages and limited benefits result in recruitment and retention challenges for organizations who hire DSPs.

High Turnover and Vacancy Rates

High turnover has been well documented in the DSP workforce for nearly three decades (Bogenshutz, Hewitt, Nord, & Hepperlen, 2014; Braddock & Mitchell, 1992; Larson, Lakin & Bruininks, 1998; Larson, Hewitt, & Knoblauch, 2005; ANCOR, 2010; Hewitt, Taylor, Kramme, Pettingel, & Sedlezky, 2015). The average annual turnover for DSP positions is an estimated 46%, with a range of 24–69% (NCI, 2018). About 38% of DSPs leave their positions in less than six months, and approximately 21% leave within 6–12 months. Across all industries, the national average separation (turnover) rate is 3.5% (BLS, 2017). Costs associated with replacing DSPs in IDD services range between $2,413 and $5,200 (Hewitt & Larson, 2007; ANCOR, 2010; Medisked Connect, 2016). Using a conservative number, the costs associated with turnover are substantial. In New York state, for example, the cost of replacing DSP workers, using an average cost per person of $4,073, was estimated at $79,804,549 in 2015 (Hewitt et al., 2015). Workforce insufficiency is also seen in high vacancy rates; current vacancy rates within long-term services and supports for people with IDD are more than 9% (Hewitt et al., 2015; Hiersteiner, 2016).

THERE ARE MANY EXAMPLES OF PROMISING PRACTICES THAT, IF TAKEN TO SCALE THROUGHOUT THE U.S., COULD LEAD TO MUCH-NEEDED CHANGE.

Training and Career Development

Direct Support Professionals need better training. Most do not come to their jobs with the knowledge, skills, and attitudes required of their roles. Federal regulations are largely silent about the preservice and in-service training required for DSPs to provide quality community support to people with IDD. At a state level it is often common that employers are required to provide a minimal number of preservice training hours (around 40) that focus on topics or basic skills that must be taught within a certain number of hours post-hire (e.g., CPR, first aid, documentation, blood-borne pathogens) and at regular intervals after hire. Rarely is engaging, interactive, competency-based training required or expected. Yet, we know far too well that research-based knowledge, sophisticated skills, and high ethical standards are required of DSPs to be effective in their jobs. Over the past several decades many sets of national and state DSP-specific competencies have been identified and refined.

Quality Long-Term Services and Supports Are Not Possible Without Quality Staff

Direct Support Professionals deliver the support needed for individuals to achieve their personally desired outcomes. This was recently acknowledged by the National Quality Forum (NQF, 2016) in their home and community based services (HCBS) quality framework. Within this framework the direct support workforce was identified as a key quality domain including a focus on the following: (1) DSPs have a person-centered approach to services; 2) DSPs have demonstrated competencies; (3) the organization and state ensure safety and respect for the worker; (4) there are sufficient workforce numbers, dispersion, and availability; (5) DSPs are adequately compensated with benefits; (6) DSPs are culturally competent; and (7) DSPs are engaged and participate in the organization and system (NQF, 2016). An increasing number of states are paying attention to the need to know more about their direct support workforce. As a result, National Core Indicators (NCI) created a staff stability survey, which is currently being used in 20 states and the District of Columbia, and obtains information about turnover and vacancy rates as predictors of individual outcomes (NCI, 2018).

Heavy Consequences

The ongoing systemic and pervasive failures in the long-term services and supports system have created heavy consequences for DSPs, individuals with IDD, families, organizations, and businesses, including the following:

• Direct Support Professionals. High turnover rates result in many DSPs being overworked, tired, and more prone to making mistakes. That coupled with the economic stresses of their employment can undermine the willingness of DSPs to remain in their jobs. Many DSPs are able to stay in the direct support workforce because they are willing to work two or three jobs and 80 hours a week to have enough income to support their families. Low wages often correlate with low value, respect, and status. DSP wages are so low and their accountability so high, that far too often good people leave a highly skilled profession they love.
• Individuals with Intellectual and/or Developmental Disabilities. The health, safety and well-being of people with IDD is at risk daily because of the workforce problems. A revolving door of strangers coming in and out of a person’s life, often required to support in the most intimate personal care routines, means that far too often they may not trust or develop a meaningful professional relationship with the DSP. Signs and symptoms of illness are missed, opportunities for community participation are lost, and people with an IDD have few choices other than congregate models, such as group homes or sheltered work settings, because community staffing is unstable.
• Families. Having skilled, committed, and known direct support providers is critical for family members to maintain employment and engage in their own community life. More than half of parents interviewed reported major career concessions (e.g., not taking a job, working fewer hours, dropping out of the workforce, turning down a promotion) related to having a child with IDD (Anderson, Larson, Lakin, & Kwak, 2002). Family members report they find it challenging to get any respite and this causes stress, health issues, burnout and, ultimately, added societal costs.
• Organizations and Businesses. The costs and wasted resources associated with high DSP turnover over decades has resulted in serious consequences for providers. This sustained turnover rate alone is debilitating; when coupled with low unemployment rates across industries since the Great Recession, organizations simply cannot find enough qualified individuals to fill positions. The limited candidate pool, and greater competition from other businesses and industries that pay better wages, have resulted in organizations being forced to consider applicants they would not have previously hired. This "lowering of the bar" results in less dependability among DSPs, and an increase in unacceptable workplace behavior among some employees (e.g., theft, drug use, neglect/abuse, unethical behavior, poor decision-making).

Conclusion

Solutions to the direct support workforce crisis are critical to ensuring that people with IDD can live, work, and contribute in their communities. Such solutions are also important because of the significant economic implications. There are many examples of promising practices that, if taken to scale throughout the U.S., could lead to the much-needed change and comprehensive systems solutions. Such solutions have the potential to promote job growth and development by filling critical vacancies and supporting growth in this industry. They will bring about greater use of public resources through cost-effective savings created by reducing the costs associated with high turnover. They will allow family members of people with IDD to keep jobs and accept promotions, increasing families’ economic well-being. Lastly and most importantly, finding solutions will improve the quality of supports and services for people with IDD and increase their full participation in community life.

These much needed solutions will not be easy and will most certainly require enormous amounts of focused advocacy and energy by people with IDD, families, allies, and advocates. But, the time for acceptance of constant crisis and a flawed system has passed. We need to boldly force solutions now!

In the last 10 years, the long-term care industry created 1.5 million jobs (BLS, 2017a). Most of this job growth was due to the rising demand for direct support workers — personal care aides, home health aides, and nursing assistants — spurred by the growth in the population of older adults (see Figure 1). From 2016 to 2026, an additional 1.8 million jobs will be created in the long-term care sector (see Figure 2), which includes services for older adults and people with disabilities such as continuing care retirement communities, assisted living facilities, home health care services, nursing homes, residential facilities that support people with intellectual and developmental disabilities, and vocational rehabilitation services (BLS, 2017b). Those 1.8 million new jobs are projected to include 1.2 million direct support jobs.

This growing demand for direct support workers means that job creation in the U.S. will increasingly be driven by the need for hands-on support for older adults and people with disabilities. However, direct support jobs compensate workers poorly and leave many in poverty. If these issues are not addressed, growth in these jobs may contribute to greater financial instability for American families. To meet new demand for care and to ensure a strong economy, we need to improve the quality of direct support jobs.

Today, direct support workers earn a median annual income of $17,000 (PHI, 2017, Nov. 10). One in five direct support workers lives in poverty, and nearly half rely on public assistance to support their families. Home care workers face even greater financial instability than direct support workers in other industries (PHI, 2017a). Women of color in direct support are especially disadvantaged — they constitute a large and growing segment of the workforce, yet they are more likely to live in poverty than their peers (PHI, 2017b). Living wages, better training and advancement opportunities, employer-provided benefits, and full-time hours for direct support workers would help ensure that new job openings in the fastest-growing segment of our economy translate into better economic opportunities for job seekers.

New jobs in direct support will also enable workers in other sectors to participate in the economy more fully — family caregivers in the labor force will be able to reliably supplement their unpaid care by hiring direct support workers. Currently, most of the 44 million family caregivers in the U.S. have changed their work schedules or left their jobs to attend to loved ones (National Alliance for Caregiving & AARP Public Policy Institute, 2016) and these family caregiving obligations ultimately cost the economy $28 billion in lost productivity (Witters, 2011). Women in the workforce are disproportionately impacted, as women constitute two-thirds of family caregivers. Ensuring an adequate supply of direct support workers will allow other workers to reach their full economic potential with the peace of mind that their loved ones are supported.

From 2007 to 2017, the long-term care industry added 1.5 million jobs (31% growth), including more than one million direct support jobs (54% growth).

• Over that period, one in six jobs created in the U.S. was in long-term care. The food and beverage service industry — which added two million jobs — was the only industry that added more jobs.
• In the past decade, four out of five new long-term care jobs were in the home care industry. Home care workers accounted for most of this industry-based growth, with the home care workforce growing by 809,000 jobs.

Source: U.S. Bureau of Labor Statistics (BLS) (2017). Current employment statistics. Employment, hours, and earnings — national. Analysis by PHI (October 4, 2017).

From 2016 to 2026, the long-term care industry is projected to add 1.8 million jobs, including 1.2 million direct support jobs.

• From 2016 to 2026, more jobs will be created in the long-term care sector than in any other industry. One in six jobs created in the economy will be in long-term care.
• The home care workforce — which will grow by more than one million new jobs — will contribute the most to the new job growth in long-term care. Growth in the home care workforce will outpace the combined growth of the fast food and registered nurse workforces, the second and third fastest-growing jobs.

Source: U.S. Bureau of Labor Statistics (BLS), Employment Projections Program (2015). Employment projections: 2014-24, national employment matrix — occupation. Analysis by PHI (October 25, 2017).

References

• National Alliance for Caregiving & AARP Public Policy Institute (2016). Caregiving in the U.S. Washington, D.C.: AARP Public Policy Institute.
• PHI (2017a). U.S. home care workers: Key facts. Bronx, NY: PHI.
• PHI (2017b). Racial and gender disparities within the direct care workforce: Five key findings. Bronx, NY: PHI.
• PHI (2017, Nov. 10). Workforce data center
• U.S. Bureau of Labor Statistics (BLS). (2017a). Current employment statistics — CES (national): Employment, hours, and earnings. National analysis by PHI (October 4, 2017).
• U.S. Bureau of Labor Statistics (BLS). (2017b). 2016-2026 Employment projections.
• Witters, D. (2011, Dec. 1). The cost of caregiving to the U.S. economy. Gallup News.

Direct support workforce challenges have existed for decades. Many factors are influencing what many fear is an impending implosion of long-term services and supports, if solutions are not found. Among the most influential factors are:

Limited Wages, Benefits, and Career Pathways

No matter how much DSPs might love their jobs, they need to be able to support themselves and their families. Low wages and lack of affordable benefits are universally identified by agencies, DSPs, and people who receive supports as the most significant issue. In addition, career pathways do not exist for DSPs. There are no required credentials that ensure DSPs have met the knowledge requirements and demonstrated proficiency in skills needed for the job, nor to certify a person’s commitment to the profession. With few opportunities for growth and development there’s little increased earning potential, and many DSPs leave the profession.

Changing Demographics

America is aging, with an anticipated 98 million people reaching 65 years of age and older by 2060 (ACL, 2017). There is also a smaller population of young workers available to enter the labor market. With more people entering retirement years, and an overall decrease in the percentage of the population in the labor force, there is increased competition for workers across all industries — including long-term services and supports — and fewer available to fill openings. This potentially reduces the number of new entrants into the direct support workforce even as the number of people needing those services grows.

Longer Lifespans

Life expectancy for individuals with IDD has increased from an average of 19 years in the 1930s to 66 years today (Coppus, 2013), and those with mild intellectual disabilities have life expectancies similar to the general population (74 years). People with IDD are living longer because of advances in medicine and improved healthcare, better nutrition, decreases in institutionalization, and increases in community participation. When people with IDD live longer, the number of years they require services increases and creates additional demand for DSPs.

Shifts in Laws and Expectations

As the result of Section 504 of the Rehabilitation Act, the Individuals with Disabilities Education Act, the Americans with Disabilities Act (ADA), and the Supreme Court’s holding in Olmstead v. L.C. and E.W. that the "integration mandate" of the ADA requires public agencies to provide services "in the most integrated setting appropriate to the needs of qualified individuals with disabilities," people with IDD and their families have a legal right to expect to live and be included in their communities. The overwhelming majority now receive individualized supports in their homes and community instead of large congregate care facilities. The shift from congregate care to home- and family-based services demands increased skill, sophistication, and flexibility on the part of DSPs.

Direct Support Professionals (DSP) fill an important role in the lives of persons with intellectual and developmental disabilities (IDD). The field has seen the evolution of this role from ensuring a person's health and safety to focusing on quality of life outcomes achieved through accessing opportunities in the community. The dedication and commitment of DSPs is a constant in our field; however, their roles continue to be redefined by the values and beliefs of person-centered, self-directed, and community-based models of supports and services.

Understanding the Past

To understand the current roles, it is important to reflect on the history of how and where supports were provided. Within institutions, DSPs were often a link to relationships with others outside of the setting through facilitating community visits or bringing community members onto the grounds. When it came to relationships with parents or families, a common practice was to "cut-off " ties in order to ease stress and emotions. Today, this may seem harsh, but the intent was to help the person with IDD and the family adjust to their new living arrangements and decrease the stress this caused.

In the early years of home and community based services, provider agencies were the sole resource for delivering needed community supports, typically through group homes, day centers, and sheltered workshops. The DSP role was to implement the policies and practices of the organization and serve as an ally to the agency. Staff who worked in group homes or day programs worked through schedules, ran programs that focused on skill building, and led people into community places. The organizational focus on health and safety was often the dominant directive, and staff interactions with families or community members were often limited. Although the mission of the organizations was about having the person be a part of the community, certain practices, schedules, and regulations created a barrier that often disconnected the person from family and community (see Figure 1, Traditional).

Traditional Disability Services

Focus has been on specialized or segregated supports that can, at times, become a barrier between the person and their chosen participation in family and community.

Integrated Services and Supports

Focus is on integrating supports into the person’s life in a way that upholds the person’s chosen involvement with family and community.

Types of Supports Leveraged

With integrated services and supports, DSPs must navigate a range of resources, relationships, and networks in the community.

In the early 2000s, expectations of support began to change as more K-12 students with IDD were completing high school alongside their peers without disabilities, and shared the same expectations of being employed, living in the community, and being active members of society. Provider organizations and state-operated agencies began to embrace person-centered practices and self-directed supports. In doing so, they recognized the need for new and innovative models for long-term services and supports that met these new expectations while building and sustaining their longstanding commitment to people with IDD (see Figure 1, Integrated).

Evolving Support Structures

Changes to the delivery of supports have brought new expectations and realities that impact every aspect of the system — state entities, provider agencies, the person being supported, the family, and DSPs. Overall, federal and state policy and guidance have been adjusted to reflect inclusive community practices, such as the Centers for Medicare and Medicaid Services’ home and community based services (HCBS) settings rule (CMS, 2014). Funded supports are being provided in a person's home (supported living) or in the home of their family (family-based support). Administrative activities, such as hiring, training, scheduling, and documentation, are being provided by either traditional provider agencies or the person with IDD themselves through self-directed options. The DSP has become an ally to the person supported while serving as a representative of the organization for which they work.

These changes have a direct impact on the roles of DSPs, both in terms of positive changes and an added level of complexity. Staff are now being matched with the person they support — recognizing personalities, interests, needs, and culture — which increases job satisfaction and improves supports. Recruitment is heavily dependent on people already known to the person, including family members, classmates, and neighbors. The person-centered plan has become the blueprint for DSPs to provide supports and focus on long-term goals. The day-to-day supports are driven by the person being supported, and delivered in the places the person chooses to go and environments where they are most comfortable.

WITH THE EMERGENCE OF INTEGRATED SUPPORTS AS A FOCUS OF THE DISABILITY FIELD AND THE ROLE OF DSPS, MORE MUST BE DONE TO TEACH THE SKILLS AND STRATEGIES NECESSARY TO MAKE THIS POSSIBLE.

Changing Expectations

DSPs are now navigating new territory. They are asked to provide supports that balance health and safety with self-determination and engagement, often without clear guidelines from many states, agencies, and families. They are asked to assure safety while acknowledging and supporting how the person sees their life within the home, culture, and community of that person. Their focus is on supporting the person, but they must acknowledge and interact with family members, friends, and neighbors. This requires DSPs to navigate the day-to-day routines, realities, relationships, and expectations of not only the person they are supporting, but of those who might be around them. While person-centered support plans offer a good understanding of what is important to and for the person, DSPs are often left without a lot of guidance on strategies for building capacity, coaching or supporting that specific person to achieve their personal outcomes.

There are many other new and competing expectations of DSPs who are working within a person-centered, community-based model, but one of the most important roles is for DSPs to assist a person to access integrated supports within the community while maintaining and building relationships with their friends and family (see Figure 1, Types of Supports). DSPs must understand and navigate formal disability supports, as well as leverage and connect to other forms of supports such as technology, relationships, and community resources. DSPs must use their own social capital and networks to connect the person to resources and people in their community that can be tapped into to achieve their desired outcomes and goals. DSPs assist the person they support in learning and using technology daily to achieve personal goals, whether it is to support taking transportation, connecting with friends or using remote monitoring for long distance support. With the emergence of integrated supports as a focus of the disability field and the role of DSPs, more must be done to teach the skills and strategies necessary to make this possible; often this is left primarily for the person, family, and DSP to navigate.

Conclusion

As DSPs assist the people they support to identify their "good life," they are providing support to keep each person on the trajectory towards that vision. New roles include such things as providing transportation, facilitating relationships with friends and peers, creating opportunities for a meaningful day, and coaching towards employment goals. DSPs continue to be a part of the person's life, providing encouragement and emotional support during times of loss, grief, joy or excitement. Some DSPs are also assisting parents with disabilities to navigate parenthood. While providing supports and teaching life skills remains a priority for DSPs, facilitating, adapting, and accommodating life experiences similar to those of people without disabilities within the community has become core to achieving the outcomes people with IDD desire.

Despite their critical role in supporting older adults and people with disabilities nationwide, women in the direct support workforce — and women of color, in particular — are more likely than men to live in poverty. Women of color in direct support also have smaller family incomes and are more reliant on public benefits than their White counterparts. This article examines racial and gender disparities in the direct support workforce, with a focus on populations that have historically experienced differential treatment in employment. Specifically, we ask: How has the racial and gender composition of this workforce changed over the past 10 years, and how do race and gender shape the demographic, employment, and economic characteristics of the direct support workforce?

Snapshot of the Direct Support Workforce

The direct support workforce includes 4.5 million personal care aides, home health aides, and nursing assistants (PHI, 2017). They are largely employed in private homes, group homes, residential care facilities, assisted living residences, continuing care retirement facilities, nursing homes, and hospitals. In this article, direct support workers who work in private homes and community-based settings are referred to as "home care workers," while those who work in nursing homes are referred to as "nursing assistants." Direct support workers assist older adults and people living with disabilities with daily tasks, such as dressing, bathing, and eating. Personal care aides also help their clients with housekeeping and may assist them with errands, appointments, and social engagements outside of the home. Home health aides and nursing assistants perform some clinical tasks, such as blood pressure readings and assistance with range-of-motion exercises.

5 Key Findings

To produce this statistical portrait of the racial and gender composition and disparities in the direct support workforce, we analyzed American Community Survey (ACS) data from 2005 to 2015 (see Tables 1-4). Race and ethnicity labels are mutually exclusive: "White," "Black or African American," "Asian or Pacific Islander," and "Other" do not include people who identify as "Hispanic or Latino." The "Other" category includes people who are American Indian, Alaska Native, two or more races, or some other race. We define "People of Color" as people who identify as a race other than White. We applied percentages from the ACS to Occupational Employment Statistics data compiled by the Bureau of Labor Statistics (BLS) to estimate the number of direct support workers in each gender and racial/ethnic cohort.

Using this methodology, we arrived at the following five key findings regarding racial and gender composition and disparities in the direct support workforce:

1. Women of color and men of all races are large and growing segments of the direct support workforce.

• From 2005 to 2015, women of color in direct support grew from 45% of the workforce (1.2 million workers) to 48% (1.7 million workers). Over the same period, men grew from 11% of the workforce (310,000 workers) to 14% (489,000 workers) (see Table 1).
• While the number of men who are nursing assistants remained the same during that period, the number of male home care workers tripled, growing from 60,000 in 2005 to 182,000 in 2015.
• Hispanic/Latina women in this workforce tend to work in home care and Black/African American women tend to work as nursing assistants. One in four home care workers (19%) is a Hispanic/Latina woman, compared to one in 10 nursing assistants (10%). One in three nursing assistants is a Black/African American woman (33%), compared to one in four home care workers (25%) (see Table 1).

2. Women in direct support tend to be older than men, regardless of race/ethnicity, and Asian/Pacific Islander direct support workers of all genders are older than their peers.

• The median age for women in the direct support workforce is 42 years old versus 37 years old for men (see Table 2).
• While direct support workers have similar median ages across most racial/ethnic groups, Asians and Pacific Islanders are the exception. The median age for Asian/Pacific Islander direct support workers is 48 years old — seven years older than the median age for all direct support workers.

3. Women in direct support generally have lower levels of formal education than men, and White direct support workers generally have higher levels of formal education than direct support workers of color.

• Fifty-three percent of women of color and 45% of White women in the direct support workforce have a high school education or less, compared to 43% of men of color and 37% of White men (see Table 2).
• Women of color in direct support are twice as likely as their White counterparts to have less than a high school education. Nineteen percent of women of color in direct support have less than a high school education, compared to 9% of White women (see Table 2).
• Among Asian/Pacific Islander direct support workers, 69% of men and 57% of women have some college education or a college degree. However, many Asian/Pacific Islander workers have less than a high school education, including 20% of women and 12% of men. These findings suggest that educational attainment varies considerably within the highly diverse Asian/Pacific Islander population.

4. Women of color are more likely to live in poverty and rely on public assistance than their counterparts in the direct support workforce.

• The poverty rate for women of color in direct support (22%) is higher than the poverty rate for White women (17%), White men (14 %), and men of color (12%) (see Table 2).
• Forty-nine percent of women of color in direct support rely on public assistance, compared to 39% of White women, 35% of White men, and 34% of men of color in this workforce (see Table 2).
• People of color in direct support are generally more likely than White workers to live in poverty, though Asian/Pacific Islander direct support workers are an exception. Among Asian/Pacific Islander workers, 12% of women and 9% of men live in poverty, and 37% of women and 29% of men rely on public assistance.

5. Men and people of color in direct support have higher personal earnings than women and White workers, but White workers have higher family incomes than people of color.

• Men in direct support have higher personal earnings than women, while people of color in direct support have higher annual personal earnings than White workers. Median personal earnings are $20,000 for men of color and $17,500 for White men, whereas median personal earnings for women of color are $17,300, compared to $16,000 for White women (see Table 2).
• Annual earnings are an expression of hourly wages, hours worked, and weeks worked. While hourly wages are not captured by the American Community Survey, 41% of women of color and 35% of White women work full-time hours year-round, compared to 51% of men of color and 43% of White men (see Table 2).
• The median family income for women of color is $43,400, compared to $52,900 for White women, $56,300 for men of color, and $60,800 for White men (see Table 2).
• Asian/Pacific Islander direct support workers have higher personal and family incomes than other racial/ethnic groups — they typically earn $19,200 annually, and their families typically earn $68,300. However, there is more variation in earnings among Asian and Pacific Islander subgroups than within other racial/ethnic groups.

Conclusion

In the coming decades, millions of older adults and people with disabilities will increasingly rely on direct support workers for assistance, and women of color will be critical to meeting this demand. Women of color make up the largest and fastest-growing segment of the direct support workforce — from 2005 to 2015, the number of women of color in direct support grew from 1.2 million to 1.7 million. In addition, from 2016 to 2026, the number of women of color in the labor force is projected to grow by 6.3 million workers, while the number of White women in the labor force is projected to decline by 384,000 over the same time period (U.S. Bureau of Labor Statistics, 2015).

Unfortunately, direct support jobs do not provide economic stability to women of color and their families — they are generally more likely to live in poverty and rely on public benefits than their counterparts, and they have smaller family incomes to rely on for support. In this context, improving the economic well-being of women of color in direct support would improve their quality of life, and it would help attract workers to this important occupation, as well as help retain them. More research is needed on the many diverse populations described in this article, particularly in regard to improving their economic stability.

Additionally, while women constitute the largest segment of the direct support workforce, men are increasingly joining their ranks — the number of men in direct care grew from 310,000 in 2005 to 489,000 in 2015. This research also shows that the characteristics of men in direct support are distinct from those of women in several respects: they are younger, more educated, and live in higher-income households than women in the profession. Further research would help explain these differences, as well as identify strategies to recruit more men into the direct support workforce.

The approach to supporting people with intellectual and/or developmental disabilities has shifted over the past several years as more and more people live outside of institutions in community residences and in their own homes. The change has transformed the way we think about staff support from "taking care" of individuals to "working with" and supporting individuals to live in inclusive communities. These changes have also required that the workforce understand emerging concepts such as inclusion, self-advocacy, person-centered planning, positive behavior support, supported living and employment, supported decision-making, and much more.

For many years, however, this new language of community support skills, knowledge, and ethics was not organized in a coherent and accessible manner useful to trainers and educators. This meant that direct support staff did not receive systematic instruction in community-based support strategies and were poorly equipped to provide the kind of support that helped people achieve their dreams of full community participation. Nor were direct support staff recognized as professionals performing complex and nuanced skills, which left this workforce undervalued and underpaid. This began to change in 1993 when the federal government recognized the importance of strengthening many occupations essential to the American workforce, and provided resources to identify the skills and knowledge needed by entry-level workers in a range of occupations.

The First Step: Learn

The human services field was one of 22 American industries that received funding in 1993 to create a nationally-developed and validated professional core of knowledge and skills. Human Services Research Institute (HSRI) — an organization providing research, support, and guidance to clients nationwide looking to develop more efficient and responsive service systems — undertook this work in collaboration with the Educational Development Center — a non-profit collaborating with public and private partners to create, deliver, and evaluate programs, services, and products. Together with a coalition of stakeholders from across the country that included college and high school level educators, human services employers, advocates and self-advocates, families and other key partners, the project staff and its stakeholder advisors worked collaboratively over a three-year period to convene hundreds of Direct Support Professionals (DSPs) across the country serving a diverse group of participants, all of whom relied on long-term support.

The groups included people with intellectual and/or developmental disabilities, older people with support needs, people with psychiatric challenges, and people with physical disabilities. Using the gold standard process for identifying core skills and knowledge called "Developing a Curriculum" or DACUM, the project team worked with these groups of direct support staff to build consensus on the core skills, knowledge sets, and work performance indicators most important to help people live full and satisfying lives. After an extensive national validation process these Community Support Skill Standards (CSSS) were published and widely disseminated, with the goal of helping DSPs learn the most updated and valid skills and knowledge essential to quality community support (Taylor, Bradley, & Warren, 1996).

Many professions, especially those that require relationships of trust with their clients, weave together the two strands of core skills and knowledge with an essential third strand of "ethics" to guide the workers’ choices, commitment, and behavior in performing their jobs. This critical third element was added as a corollary to the Skill Standards in 2001 when the President’s Committee on Persons with Intellectual Disabilities (formerly PCMR) provided support for a stakeholder advisory group to develop and validate ethical guidelines. This meant that in addition to the knowledge and skill at the core of the profession, direct support staff were also able to learn important values-based practices that assured a respectful and ethical posture in their work (see Figure 1).

Next Step: Lead

As the institutional wall began to come down, a new language of community living was created and many tools, including the CSSS, were created to help support individuals to life fulfilling community lives. But, where did the CSSS lead?

First, the collaborative aspects of the CSSS project, including its diverse national stakeholder group and the many other stakeholders and direct support staff gathered under the project’s DACUM umbrella, forged personal and professional connections that have sustained and grown over decades. These provided leadership in the development of the direct support workforce. One enduring outcome of the CSSS and other leadership efforts was the establishment of the National Alliance for Direct Support Professionals (NADSP;). The University of Minnesota’s Research and Training Center on Community Living and HSRI offered substantial guidance and support in the creation of the Alliance. Through the adoption of the term "Direct Support Professional" in its title and in the many projects and publications generated by members of NADSP, this term has been adopted nationally to signify a person performing direct support who is competent, knowledgeable, and ethical. Further, NADSP has developed a multi-level, national, voluntary certificate program based on the CSSS through which direct support staff across the country who meet its requirements may obtain this rigorous certificate status. In addition to providing a certification program, NADSP is active in advocating for better wages and work conditions, building partnerships with self-advocates and human service professional organizations, and providing high quality training for DSPs.

Another group with a substantial focus on direct support — the Mid-Hudson Coalition, a group of human services employers in New York State — has made good use of the CSSS by reaching out to local community colleges to communicate the skills and knowledge sets most desired in their workforce. Both community colleges serving this region, SUNY Ulster and Duchess Community College, have developed certificate programs aligned with the standards.

In Massachusetts, the state’s Department of Developmental Services (DDS) worked with community colleges to create a certificate program aligned with the CSSS. The tuition is paid by the Massachusetts DDS in partnership with employers whose DSPs attend the certificate program. Bristol Community College in Massachusetts used the standards to create a core track of coursework to prepare students to enter either human services or health care degree program.

Using the CSSS and other resources, Georgia offers a community college-based certificate that fully engages people with disabilities as "learning partners" to help DSPs master important skills and knowledge within the context of a respectful learning partnership. This program has been replicated in New Hampshire.

Perhaps the most widespread application of the CSSS has occurred within the online direct support educational program called the College of Direct Support, which is now part of a suite of online learning products called DirectCourse. The platform is supported by Elsevier (an educational publisher) with content development expertise from the University of Minnesota’s Research and Training Center on Community Living and a board of content editors. The College of Direct Support offers an array of online courses whose target audience is DSPs working with people with intellectual and developmental disabilities. The courses are carefully aligned with the CSSS and the code of ethics. Over 9 million learners have enrolled in the College of Direct support since it began, and have completed nearly 12.6 million lessons.

Another enduring application of the CSSS was initiated by the Ohio Chapter of NADSP and the state’s Developmental Disability Council, and resulted in the creation of an architecture for an employer sponsored certificate program based on the CSSS called Ohio DSPATHS. PATHS employs a unique skills mentoring role in the certificate that partners certified and skilled DSPs as skills mentors to DSP learners, providing both a career path and substantive support to learners. This project vastly increased the collaboration of individual employers across the state in joint efforts to strengthen the workforce. At certificate graduate events their work is celebrated, and selected work portfolios are read, offering inspiration and a window into the everyday accomplishments of DSPs.

Goal of the Journey: Love

Beyond the anchors of a profession — skills, knowledge and ethics — it is important to think about why people choose direct support. This is especially important when the economy is good and DSPs are hard to find. The work cannot be captured solely in a skills grid or listing of competencies. People who choose to do the work are motivated by both heart and spirit that engenders deep concern for the well-being of others. Some may not be fully aware of this when they come into the work, but become uplifted and often loved by the people they support. Many DSPs find enormous satisfaction and joy in this experience. Simply, it is one more opportunity to love and be loved. Relationship is a vector that carries love and learning in two directions and the direct support profession is all about relationship and support in community. As Parker J. Palmer wrote in Let Your Life Speak: "When we live in the close-knit ecosystem called community, everyone follows, and everyone leads" (Palmer, 1999, p. 74).

In college, I lived with a nursing student who completed a credential to work as a certified nursing assistant (CNA). For college work, she had an awesome gig. She was working alongside nurses, gaining important professional experiences, and she was paid decent wages. The credential she earned also meant something to her professionally; it was something she listed on her resume as she advanced in her career. At the same time, I worked as a personal care assistant, providing support for a young girl living in her family home. Some supports I provided were similar to those my roommate provided as a CNA: I attended to her medication and health needs. I also assisted with her physical endurance goals. I helped motivate her to get out of her wheelchair and learn to use her walker. We walked around her neighborhood as she strengthened her legs and arms. I assisted her with her schoolwork, and took her to the park to play with other children. This work was outstandingly meaningful to me, and it certainly shaped my professional interests. Unfortunately, I never considered this work as a career or a stepping stone on the pathway to my professional goals. My training for this position was minimal, and I never received specialized training for my role beyond viewing a preservice training video at the organization that sent me my paycheck. Following that, I never again stepped foot in the organization’s administrative building for the years that I worked with this child.

Later in my career I learned the term "Direct Support Professional," which encapsulates several job titles including personal care assistants. Direct Support Professionals (DSPs) play a vitally important role in supporting people with intellectual and developmental disabilities to live, work, and enjoy living in their communities. Given their close, consistent proximity to the people for whom they provide support, DSPs can support peoples’ self-determination, independence, and social participation. Well-trained DSPs will provide person-centered supports, and maximal opportunities for a person to exercise choice and participate in their community. As such, the role of the DSP is specialized, and contrasts with other support professions, such as CNAs. However, implementation of preservice and professional development training has not kept up with the demand for DSPs to provide high quality supports for people in the community. The aim of this article is to present a brief overview of professional development opportunities for the direct support workforce. A special emphasis is given to competency-based credentialing because of its potential to professionalize the important work performed by this high-demand workforce.

Professional Development in the Direct Support Workforce

State and federal regulations are largely silent about mandated preservice and in-service training for DSPs (Marquand, 2013). Some states that do require preservice training often focus on basic skills such as CPR, first aid, and documentation. There is often little focus on person-centered services or supporting a person’s self-determination. Even in states with a high standard for preservice and in-service training, organizations have a difficult time keeping up with the delivery of them. In 2015, the Research and Training Center on Community Living (RTC-CL) at the University of Minnesota, in conjunction with the New York State Association of Community and Residential Agencies (NYSACRA) and the New York State Rehabilitation Association (NYSRA), conducted a research study that included 206 provider organizations in New York state. New York requires 100 hours of preservice training, but organizations reported that DSPs received an average of 50 hours of preservice training, and 33 average hours of training in subsequent years (Hewitt, Taylor, Kramme, Pettingel & Sedlezky, 2015). The scant number of training hours delivered to DSPs can be compared to the minimum 75-hour preservice education requried to become a CNA or home health aide. Many difficulties can interfere with completion of DSP training. These include (a) federal reimbursement rates that cover little more than personnel costs; (b) the wide dispersal of DSPs across different work sites rather than the centralized location where training is provided; (c) difficulty finding time to deliver training due to the widely varying hours worked by DSPs; and (d) the high vacancy rate in DSP positions, which makes it difficult to cover shifts while DSPs attend training. Despite this, a series of focus groups conducted during this same study indicated that DSPs were anxious to learn more, develop their skills, and continue careers in the field.

1. CSSS 1996: Community Support Skill Standards
2. Hewitt 1998: IDD Residential Core
3. NADSP 2002: National Alliance for Direct Support Professionals Core Competencies
4. APSE 2011: Association of People Supporting Employment
5. DOL LTSS 2012: Department of Labor Long-Term Services and Supports Core Competencies
6. FLS 2013: National Frontline Supervisor Core Competencies
7. NADD 2014: National Association of Dual Diagnosis Competency-Based Direct Support Certification
8. CMS 2014: Centers for Medicare and Medicaid Services DSP Core Competencies

Source: Hewitt, Lakin, Macbeth, Kramme, & Benway (2018).

Competency-Based Training

Several direct support workforce competency sets have been identified and refined in response to recognizing and profesionalizing this unique and important workforce. Competency sets delineate the necessary knowledge, skills, and attitudes needed to provide high quality supports. Figure 1 depicts these national professional competency sets. These sets have been validated by an array of stakeholders, which included people receiving services, family members, guardians, DSPs, supervisors, and agency administrators. The competencies have evolved in response to the demands of increasingly individualized and self-directed services.

A widely used and recently updated set of competencies that specifically apply to DSPs was adopted by the National Alliance for Direct Support Professionals (NADSP). There are 15 competencies with corresponding skill statements characteristic of DSPs providing quality supports on the job. Figure 2 identifies these 15 core competencies for DSPs.

Many anecdotal reports indicate the increased quality of supports provided by DSPs whose professional development is aligned with these nationally validated core competencies. In addition, a large-scale randomized control trial of a training program aligned with the NADSP core competencies indicated a significant decrease in an organizations’ DSP turnover rates compared to organizations who did not implement the training (Bogenshutz, Nord, & Hewitt, 2015). This could indicate that DSPs felt more prepared for, satisfied with, and committed to their jobs. These competencies are the basis for credentialing programs offered by organizations across the nation.

Implementing Credentialing and Career Ladder Opportunities

Competency-based credentialing opportunities for the direct support workforce are being implemented at some organizations across the U.S. In 2014, RTC-CL worked with the Office for People with Developmental Disabilities (OPWDD) in New York state to create recommendations for programmatic and financial implications of implementing a voluntary statewide workforce credentialing program. This project included many phases and was guided by an advisory committee that included people receiving supports, DSPs, supervisors, administrators, OPWDD personnel, and provider organizations in New York. This study included a literature review, environmental scan, a series of focus groups across the state, and a quantitative survey completed by provider organizations. From these data RTC-CL created succinct recommendations for implementing a successful statewide credentialing program, a financial model that delineated costs for the first five years of implementation, and a marketing plan for promoting it across the state. The recommendations called for a multi-tiered model that utilizes a variety of educational delivery methods, including on-the-job training to ensure that DSPs generalize the skills they learn in coursework. The multi-tiered model created for the state of New York is depicted in Figure 3. DSPs who completed the first credential could work on the second credential and so forth in order to continue specializing their skill set. Each credential tier was paired with an hourly wage increase commensurate to the amount of time associated with advancing their skills.

Advocacy efforts are still underway in New York to implement the credential model and receive legislative support. At the RTC-CL, staff are currently working with several organizational or cooperative workforce credentialing efforts in New York to summarize the ways they are utilizing credentialing, and how it has impacted the workforce. These organizations unanimously report that the supports provided by credentialed DSPs are of high quality. One example of a way that an organization is noticing this impact is by the involvement of its DSPs pursuing credentialing in individualized support planning meetings. Before participating in the credentialing program, none of the DSPs participated in these meetings. After participation, and with the permission of the individual they supported, all employees pursuing the credential at the organization determined that it was their place to attend these meetings. Participation in the credentialing program has helped the DSPs to better understand delivery of person-centered services and their role in supporting people to achieve the person’s plan.

1. DSP Credential I: 50 Hours
2. DSP Credential II: 100 Hours
3. DSP Credential III (Mentor): 40 Hours
4. Frontline Supervisor & Management: 40 Hours

Source: Hewitt, Taylor, Kramme, Pettingell, & Sedlezky (2015).

Conclusion

Currently, implementation of certification or credentialing programs similar to CNA programs does not widely exist for DSPs. Organizations and states that are implementing or seeking to implement workforce credentialing programs do so for three primary reasons: Successful completion of a professional credential increases justification for raising wages and investment in highly skilled DSPs; credentialing programs help professionalize the field through a career pathway and occupational recognition; and well-designed credentialing programs provide targeted educational opportunities to learn new skills while working, increasing the quality of supports. As credentialing efforts across the nation gain momentum, they are promising in terms of their ability to stabilize the direct support workforce, provide professional development opportunities for DSPs, and ultimately improve quality of life of people with intellectual and developmental disabilities.

If you ask savvy directors of agencies serving persons with intellectual and other developmental disabilities (IDD) to name their most important resource without which there would be no mission, they will not say "money." Direct Support Professionals (DSPs) are the principal resource, and funding, though important, is secondary.

DSPs represent 80% of an agency’s workforce and are functionally responsible for most day-to-day quality supports needed by persons with IDD. They are scarcer than ever for reasons that are all too obvious — turnover rates, demographic shifts, occupational non-recognition, and compensation. Remedies seem out of reach. Experience and common wisdom reveal that stabilizing the DSP workforce begins with concerted retention efforts. Workplace culture development is both a retention commitment and a quality enhancer, requiring little money yet serious effort (see Figure 1).

CULTURE IS ONLY AS GOOD AS THE PEOPLE DECIDE IT SHOULD BE. CULTURE IS THE MEDIUM WHICH HOLDS THE MISSION IN ITS HANDS AND DETERMINES ITS SUCCESS.

What is Workplace Culture?

Culture is the personality of an organization, an amalgam of collective memories and experiences that generate written and unwritten rules. Culture is what it feels like to work for a specific employer.

Culture is the silent given. It precedes and surrounds all employees, and it is defined either by what is allowed or what is deliberately created. Culture is the medium in which people work. Mission, strategy, and outcomes are all accomplished by people, and people are deeply affected by their culture. How DSPs are affected in their work is the manifestation of their culture. Further, all culture is local; namely, the culture or subculture in which DSPs spend the most time wields the strongest influence over them.

Metaphorically, culture in our workplace is the air we breathe (e.g., fresh, foul, invigorating or stale); the climate in which we function (e.g., hot, cold, unpredictable); and its members’ brand or style (e.g., friendly, unfriendly, supportive, role-oriented, achievement-based, competitive, power-wielding). Culture will define the health and productivity of the organization in ways that sustain or poison. In this sense, culture is contagious and is everyone’s responsibility.

Culture is only as good as the people decide it should be. Culture is the medium which holds the mission in its hands and determines its success. In order to engender mission loyalty and personal ownership of responsibilities, every segment of the workplace must be a part of its improvement. The quality of DSP work depends on its culture, a culture that will either drive or drag it.

Workplace culture is complicated, but it is not mysterious. It is a human enterprise that organizes itself both deliberately and silently, breeding certain characteristics into the organization’s DNA. These markers are real and some have a kudzu-like root system; however, markers are not so rooted that they cannot be removed and replaced. For example, it is difficult but not impossible in a large organization to bend incrementally its vertical, author-itarian leadership to a more horizontal interpersonal, people-friendly approach.

Source: Parsons-Luxner, J. & Obijiski, R. (2017). Intentional workplace culture and DSP retention. PowerPoint presentation.

Workplace Culture is More thant Morale

Improving workplace culture is not simply about feeling supported or coddled; work can be difficult and uncomfortable. Notably, culture is not morale, but rather morale is the prevailing temperament or symptom of a culture. One cannot cheer-up a culture by trying to boost its disposition. The process requires open-minded leadership that unearths staff perceptions and assumptions while remaining unthreatened by the responses and demonstrating the courage to make changes. For example, a leader may assemble a focus group and assign the task of giving words to the unwritten rules that exist beneath the surface in all workplace cultures: getting along, getting ahead, getting by, getting in trouble, getting out of trouble. They may inquire further about what else is allowed silently that deserves to be spoken aloud and given a chance to change. Some responses may be discomfiting. It is impossible for leaders to learn what they think they already know.

Examples of Positive Steps for Culture Improvement

Initiatives, tools, and exercises for assessing and improving workplace culture may be accessed through a range of sources, including:

• Realistic job preview protocols
• Staff development resources from organizations such as the National Alliance for Direct Support Professionals
• National accreditations that set high industry-performance standards, such as that from the Council on Quality and Leadership
• Broad use of National Core Indicators surveys
• Adoption of performance evaluations that include the practice of a code of ethics and set of validated core competencies
• Published tools that help to diagnose an existing organizational culture
• 360-degree evaluations for all staff
• Inventories that assess leadership performance in comparison with other leaders
• DSP organizational participation in information-sharing and decision-making
• Listening tours that inform strategy
• Simple human recognition of and regular interaction with DSPs
• Remunerated peer skill-mentorship programs
• DSP welcoming protocols
• Learn-and-earn incentives
• Frontline supervisor development

Frontline supervisor skills remain key to the retention of DSPs because supervisors interpret organizational culture to the DSP workforce. Administration and middle management must exhibit a cascading commitment to excellence and capacity building, but the most powerful focus within an organization remains the frontline supervisor and their skills in identifying effective process and tracking outcomes, interrelationship skills, coaching techniques, teamwork, self-awareness, and innovation.

Conclusion

If the nobility of human services is a commitment to honor the disability among those served and enable abilities to grow to their potential, the portrait of a desirable culture is one of ongoing development, self-determination, responsiveness, and positive relationships. People want to feel a part of such an organization, enjoy a team spirit, and experience the blending of personal values consistent with those of the organization. In this context, DSPs and other employees of the organization achieve and exceed quality metrics because they have the staying power, will, and encouragement to do so. Commitment to intrinsic excellence is a powerful game-changer compared with external standards compliance and task mastering.

A workplace that decides its service culture and financial success rest on personal outcomes for people with IDD will experience a concomitant shift in the locus of power from executive to person-supported. In this sense, the person with IDD becomes the most important person in the system. Logically and strategically, the second-most important person is the DSP.

Self-directed services and supports are a series of approaches that enable people with intellectual and/or developmental disabilities (IDD) and their families to exercise greater control of their supports than would be expected in more traditional services. Broadly speaking, in self-directed supports a state will assign a budget to a person with IDD and then help the individual design a service plan that meets her or his needs within that budget. The person with IDD (and her or his family in many instances) then hires the service providers and purchases the goods they prefer, often with the help of a paid support broker. In contrast to traditional supports in which an agency chooses Direct Support Professionals (DSPs), self-direction puts the authority and responsibility to hire, train, manage, and fire workers in the hands of people with IDD. A fiscal intermediary will typically assist with payroll tasks to be sure that all DSPs are paid accurately and that taxes are withheld as required by law.

There has been rapid growth of self-directed supports since the initial pilot programs in the 1990s. As of the last national study in 2017 (based on 2015 data), self-directed services were available to people with IDD in 42 states (DeCarlo, Hall-Lande, Bogenschutz, & Hewitt, 2017). There is considerable variation between the states in how they designed their self-directed programs. For example, some states have strict caps on budgets for self-directed supports, while other states allow for more robust and individualized budgets. Some states permit individuals with IDD to hire close family members such as parents or a spouse as DSPs, while other states do not allow such hires. Some states allow an individual to purchase a wide array of approved goods and services, while other states allow expenditures on only a small set of pre-approved services. State administrators who oversee self-directed supports often report a difficult balance between wanting to enable individual choice in how a person with IDD uses supports and from whom, with the need to be cautious in using the taxpayer money that pays for self-directed supports.

BY ALLOWING PEOPLE WITH IDD TO HIRE FAMILY, FRIENDS, NEIGHBORS, AND MEMBERS OF THEIR FAITH COMMUNITIES TO PROVIDE DIRECT SUPPORT, SELF-DIRECTION HAS TAPPED INTO NEW POOLS OF WORKERS.

Regardless of program design, self-direction provides individuals with IDD and their families with some degree of control and flexibility in how their needs are met. However, the degree of control depends on the particular program. For instance, in some states, agency-with-choice models have emerged as a hybrid between self-direction and traditional agency-based services; a person with IDD recruits their own DSPs, who then become employees of a traditional human service organization that helps to manage the employee and becomes their employer of record. In this model, people with IDD and their families have less overall control than fully self-directed supports, but can rely on a third party to manage some of the difficult aspects of employing direct support workers.

No matter what model of self-direction is available in a particular state, people with IDD and their families must consider whether self-direction fits their needs. With the flexibility and choice that can come with self-direction also comes a great deal of responsibility. Individuals who self-direct must carefully plan how to use their allotted budget and make smart choices within the often complex rules that regulate self-direction. Individuals with IDD and their families should also consider whether self-direction is the best option for them in comparison to other programs that are available in the state. Particularly if budget caps are low, it may be hard for a person to get her or his needs met by using self-direction. Individuals with IDD and their families should always consider all options before choosing the program that best suits their needs. Ultimately, self-direction may be best for people with IDD and their families who are willing to advocate for their needs, navigate service systems with limited support, use their social resources to find and manage workers, and have a high degree of accountability for how their funds are used.

For people who choose to use self-direction, there are special considerations related to the direct support workforce. One of the benefits of self-direction is that it typically affords people with IDD and their families much more choice of who provides direct support and how support is provided. In most cases, the person with IDD can choose people they already know to provide their support, and in many states (but not all) can assign wages and work hours for their workers. This choice in who provides direct support for a person with IDD can often result in a better match between the individual and their workers than would be expected in agency-based supports. With the person with IDD as the employer, they have more power to train DSPs to meet their specific needs according to individual preferences.

Some people with IDD, as well as administrators who oversee self-directed services for states, also appreciate that self-direction can facilitate a better cultural match between a person with IDD and a DSP. This may be particularly important, for example, when an individual with IDD prefers to speak a particular language or when they have culturally-grounded food preparation preferences. Self-direction enables a person with IDD to seek out support providers who understand their needs, both cultural and individual, and places the individual in charge of advocating for themselves and training staff to meet their specific needs, making for a strong opportunity for self-determination.

WITH THE FLEXIBILITY AND CHOICE THAT CAN COME WITH SELF-DIRECTION ALSO COMES A GREAT DEAL OF RESPONSIBILITY.

Another major impact of self-directed service and supports is the expansion of the direct support workforce. There has been a shortage of Direct Support Professionals for many years, and that shortage has reached a critical level. The reasons for the shortage are many, including low wages, high turnover, inadequate supervision, limited career advancement opportunities, and often a lack of affordable fringe benefits. Also contributing to the shortage are demographic shifts in the United States. The pool of workers that has traditionally worked in direct support is shrinking as they reach retirement age, and there are fewer new workers entering the field. By allowing people with IDD to hire family, friends, neighbors, and members of their faith communities to provide direct support, self-direction has helped to move us beyond the traditional notion of who can provide direct support, and in doing so has tapped into new pools of workers. As self-direction continues to grow in popularity, this organic expansion of the direct support workforce could help to alleviate strain on other parts of the disability service system.

Self-directed services and supports have the potential to transform the direct support workforce and the way in which people with IDD meet their support needs. From an individual perspective, self-direction gives people with IDD more control of their supports, and can help to improve the self-determination of people with IDD. From a policy perspective, self-directed supports have provided a cost-efficient way to address the direct support workforce crisis, which, when brought to scale, could have major impacts on people with disabilities, state service systems, and the economy.

The direct support workforce is critical to the quality and sustainability of the long-term services and supports sector in this country for people with intellectual and developmental disabilities (IDD). While demand has never been higher and will continue to grow, the pace at which true solutions to the workforce challenges are being identified, implemented, and evaluated across states is so slow as to be comparatively non-existent. The realities of high turnover, low wages, poor benefits, and higher vacancy rates have been an ever-evolving plague that has become extremely difficult to eradicate. While asking for and celebrating 1-5% rate increases in order to keep up with inflation is important, it is not the solution to the direct support workforce crisis. The bottom line is advocates, policymakers, and their allies have been slow to make identifying, funding, and implementing solutions to this crisis their top priority. Their focus has been on protecting and expanding services and supports for people with IDD. Without bolder and bigger action, the long-term services and supports system is at stake, and the people with IDD who need it to meet their most basic needs are at severe risk.

Radical changes are needed in national and state level approaches to the procurement and development of the workforce that supports people with IDD. Without these changes, we will not be able to ensure the rights of people with IDD to live and work in their communities. There are practices that we know would address the workforce crisis. For instance, small-scale projects funded through demonstration grants have identified possible solutions, but only small investments have been made by federal, state, and local governments so none have been brought to national scale. Most of these efforts were not sustained following initial funding periods.

We need strong advocacy, community commitment, and action to make solutions a reality. We need collaboration, support, and guidance from state and federal government agencies that focus on health and human services, labor, and education. We need them to work with businesses, advocates, and Direct Support Professionals (DSPs) to find systemic solutions that will:

• Ensure that who DSPs are, what they do, and why they are important is known to members of all our communities.
• Improve DSP identity, respect, and recognition within organizations, state/federal agencies, and communities.
• Create an occupational title recognized by the Bureau of Labor Statistics that accurately identifies the direct support workforce.
• Fund the use of competency-based training models that result in credentialed or certified staff, with corresponding wage increases upon completion.
• Develop industry-specific pipeline programs for youth and young adults to gain education and training while in high school, for displaced workers through workforce centers, and for recently retired persons who are looking for part-time work.
• Gather comprehensive data across states on the direct support workforce, including but not limited to DSP and frontline supervisor vacancy and turnover rates, wages, percentage of full-time vs part-time staff, overtime paid in last 30 days, staff-to-person-served ratios, and authorized versus utilized services by people with IDD who are supported.
• Provide specific interventions and strategies for service providers and individuals/families that employ DSPs on how to maximize their ability to recruit, select, and retain them.
• Promote increased use of self-directed services that provide options for individuals and families to recruit, select, and retain their own DSPs (including paying family members).
• Increase the use of technology-enhanced supports that can provide necessary supervision and support for people with IDD without requiring in-person, hands-on staff.

Through the untiring work of self-advocates, families, DSPs, service provider agencies, and public policymakers a largely institutional care system has been turned on its head by developing a myriad of community-based supports and service options over the past four decades. Now we must demonstrate leadership by preserving and advancing the successes of the past, embracing the work of direct support as a true profession, and attracting new generations who seek it as a career. If we are to really meet the needs of people with disabilities, DSPs will need to possess the tools to be effective community builders, possess the skills to work without a supervisor standing next to them, and understand their rightful place as the lynchpin to quality support for people with disabilities in every community in the country.