The crisis in the direct support professional workforce--finding, keeping, and training DSPs. (Who Cares?).

America's Direct Support Professionals are the backbone of services for people with disabilities, yet the field is one that suffers chronic shortages that continue to mount at an alarming rate, leaving quality of care hanging in the balance.

Who are the workers in this field and what do they face? Why is the shortage critical? What's to be done about it?

In this Special Feature, EP takes an in-depth look at these issues with articles and editorials from those on the front lines in this field, along with a tribute to outstanding Direct Support Professionals.

If you have a family member who receives community support services such as in-home care, residential services, or employment services, it is not news to you that there is a crisis in the air regarding the availability and quality of direct support services. You have likely known for quite some time that there was a problem. The ability of families and agencies to find, keep, and train people who are hired to support children and adults with developmental disabilities has become increasingly difficult over the past decade. In fact, studies by the University of Minnesota, the Colorado Department of Human Services, and ANCOR (The American Network of Community Options and Resources) have shown that it has become the single biggest barrier to the growth and sustainability of community supports for children and adults with developmental disabilities.

To families, this workforce crisis results in serious consequences for them and their children, brothers, and sisters. The reality, for many families who depend on in-home support services, is that they cannot rely on these services being delivered. In a recent study conducted in Minnesota about Home and Community Based Waiver Services, approximately 30 percent of authorized hours for in-home services were not provided to families who were counting on these hours. For these families, the consequences are that they get fewer breaks, their stress levels are increased, and they are quicker to burn out in their ability to keep their family member at home. For the children and adults who receive these in-home supports, the consequences are that they simply do not achieve their desired outcomes. This may mean they do not get to participate in desired activities such as community events or they miss appointments with specialists. Others are not able to go shopping to buy necessities such as medications and groceries.

For families who have children or other members who receive out-of-home services in residential or employment settings, the issues exist as well. Staff vacancies can result in families who fear that their child or sibling will be left alone or uncared-for. High turnover means that people who receive support have little continuity and cannot depend on familiar people to provide for their basic needs or to establish positive and supportive relationships with others. Poor training results in service providers not knowing how to offer appropriate supports for the individual.

Issues of direct support recruitment, retention, and training affect the quality of support services. Families have known this for a long time. Moreover, the issues of turnover and training have plagued community services since their inception. Yet just within the past several years, these issues have risen to a priority level for policymakers, advocates and provider agencies. Without a comprehensive understanding of the issues and focused attention on multifaceted solutions, the ability to maintain existing community support services, let alone develop new ones, could be threatened.

WHO PERFORMS DIRECT SUPPORT WORK?

There is not a clear national and societal perception of who direct support professionals (DSPs) are and how they contribute to our communities. In fact, what most Americans learn about direct support workers they learn from negative exposes about abuse and neglect featured on television news programs. Recently, through the National Alliance for Direct Support Professionals (NADSP), an effort has been underway to improve public knowledge and understanding of the roles of DSPs. A first step in this process is to come to an agreed-upon definition of the role of DSPs. The NADSP has embraced the following definition: Direct support professionals assist individuals with disabilities to lead self-directed lives and to contribute to their communities. They encourage attitudes and behaviors that enhance the inclusion of people in their communities. The second step in this process was to develop a national Code of Ethics for DSPs.

DSPs work in many different settings with people who have varied support needs. They are sometimes hired directly by families and sometimes by agencies to work in family homes, individual homes, group homes, supported employment, and other residential and employment settings. There is not a single title used to describe the work that DSPs do. Unlike professional titles such as nurse, teacher, or physical therapist, the role of DSP comes with many titles (e.g., residential counselor, job coach, direct care worker, life skills trainer).

* There are an estimated 400,000 full-time equivalent DSP positions in community residential settings and around 100,000 DSP positions in employment settings (Larson, Hewitt & Anderson, 1999).

* Another 750,000 DSPs work in homemaker and home health aide jobs in the United States (Bureau of Labor Statistics, 1999).

* DSPs are typically women who are between the ages of 18 and 40. Most have completed some college, and as many as a third have college degrees (Hewitt, Larson & Lakin, 2000; Test, Solow & Flowers, 1999).

* DSPs are from many cultural, ethnic, and linguistic backgrounds; increasing numbers of DSPs are recent immigrants to the US.

WHAT ARE THE RECRUITMENT CHALLENGES?

With today's low unemployment rates in the US, the high demand for new employees in service-related industries, and the reduction in the pool of people from which to choose new employees, finding people to work in direct support roles is the number-one challenge faced by human services agencies. Families who hire their own service workers also report that it is difficult to find people to provide support to their children. Throughout the United States the ability to recruit DSPs is problematic, Some studies have identified DSP vacancy rates as high as 17 percent.

In addition to the economic and demographic issues that influence the ability to find people to work in community human services, other factors also contribute. There is a lack of understanding about community direct support work. High school students, young adults who are considering possible careers, and others looking for work often have no concept about what direct support work is or how they might get involved in this field. There are few pre-service training programs to attract people. Most workforce system agencies do not have programs designed to train and place people into direct support positions.

WHAT ARE THE RETENTION CHALLENGES?

Not only is it difficult for families and agencies to find people, it is also difficult to keep them once they have begun working in a direct support position. DSP turnover in community services has consistently been between 45 and 70 percent. What this means is that each year, between 45 and 70 percent of the DSPs who are hired leave their positions. Previously, service providers could endure this high turnover because they constantly had new people willing and able to fill open positions. Over the past several years, as the vacancy rate for DSP positions has increased, the effects of high turnover have worsened. In addition to high DSP turnover, the annual turnover rate for frontline supervisors is around 27 percent.

Several factors have been associated with DSP turnover. These include wages, socialization practices, training, supervisor tenure/practices, and the characteristics of the people who receive support services. DSPs report that the primary reasons they leave are: difficulty getting along with co-workers, wages/benefits, and issues with their supervisor.

DSP wages from community support services for people with disabilities are low, and have always been low when compared to positions in such other human service settings as institutions. Wages for DSPs in private community settings were last measured nationally in 1992. At that time the average starting wage was $5.22 per hour and the average wage was $6.85. Several state studies have been conducted since that time and have identified direct support staff starting wages between $7.00 and $8.00 per hour and average wages between $7.00 and $9.00 per hour, depending upon the state and the study. Wages paid to DSPs in the community have consistently averaged $2.00 to $3.00 per hour less than those wages paid to DSPs who work in institutions. Also, DSPs who work in employment settings make more then DSPs who work in residential and other community settings.

WHAT ARE THE TRAINING CHALLENGES?

Training DSPs is also a significant challenge for families and provider agencies. It is easy to understand that if more than half of the DSPs who are hired actually leave within the first year, keeping up with training of DSPs is difficult. Also, with the ongoing growth of community supports, DSPs work in more isolated and geographically diverse situations. Just getting DSPs to training sessions is hard, especially when the demand to have them working on site is so intense.

In addition to the logistical challenge of training DSPs, the role of DSPs has dramatically changed over the years. DSPs are expected to do things now that they were not expected to do when they worked in congregate settings. For example, DSPs are expected to communicate and problem-solve with families, provide medications and medical treatments to people, create program plans, and serve as community connectors. These new roles require new skills and thus new training for DSPs.

In 1996 the Human Services Research Institute received a grant to develop skill standards for community human service workers. This set of standards, The Community Support Skill Standards (CSSS), clearly defines the competencies required of DSPs who support children and adults in community human service settings. Current training requirements and practices for DSPs in most states focus only on "seat time" in a classroom (i.e., 40 hours of training) or mandated training topics (e.g., first aid, rights, infection control). To date, no state has a mandated training system that comprehensively addresses the skills necessary for community support work as identified in the CSSS. However, a few states and local coalitions have developed credentialing programs that do include a comprehensive education or training program designed to teach the skills identified in the CSSS.

WHAT ARE THE SOLUTIONS?

There are many things that need to be done to address the challenges of direct support staff recruitment, turnover and training. Many of the needed interventions are "systemic," meaning that they involve legislative or political processes. Other strategies can be implemented at the local level by interested families, individuals, and provider agencies.

Certainly one big intervention would be expanding the pool of potential workers for the field of community human services. This expansion must include reaching out to new groups of people as possible employees, including: youth, retirees, people in other industries who might want a change, people with disabilities, and people who are unemployed and looking for new work. Enhancing the status and image of the work that DSPs do is also critical. It is important to educate people in the community about the roles and contributions of DSPs. This can and should be done through marketing campaigns that include popular media as well as efforts to infuse secondary educational systems with information about the direct support profession.

States and provider agencies need to understand direct support recruitment, retention, and training challenges clearly. They need to be able to identify and articulate their exact vacancy rates, annual turnover, the average tenure of employees, and the challenges created by DSP wages and benefits. Additionally, providers need to better understand how they can influence change within their own organizations. There are numerous strategies that providers can implement that will reduce their employee turnover. Many providers simply need technical support and training in these intervention strategies.

Attention must also be given to increasing DSP wages and benefits. DSPs should be able to live on the wages they earn and should not have to work two or three jobs just to make ends meet. In addition, DSPs need to have access to important benefits such as paid vacation/sick time, health insurance, and retirement plans.

Increasing consumer-directed support options as a service for citizens with disabilities and their families is also an important solution to the DSP workforce challenges. This option allows individuals and families to direct how the resources for their services are spent. Often this can result in increased DSP wages, greater flexibility, and increased access to people who can potentially provide direct support.

Clearly, there remains a DSP workforce challenge in community support services for people with disabilities. Without a concerted effort on the part of all people who have a vested interest in the quality of life for people who receive support services, the ability to sustain and to develop new community services is in jeopardy. Get involved. Be a part of the solution!

Amy Hewitt, PhD, is a Research Associate as well as Principal Investigator and Co-Principal Investigator on federal and state research grants at the Institute on Community Integration Research and Training Center on Community Living, University of Minnesota. For more information on the Research and Training Center check their Web site: http://www.rtc.umn.edu/dsp

ANCOR--The American Network of Community Options and Resources. (Direct Support--Overview)

Edited by Gale Jurasek

These figures were developed by ANCOR's state representatives, state provider association executives, and regional directors. Each statement is based on the perspective of the individuals reporting for that state.

Montana--The average annual turnover rate among providers is 120% The Montana Association of Independent Disabilities Services (MAIDS), the state provider association in Montana, is poised to bring suit against the state in order to bring about parity between wages of direct care staff working in communities and direct care staff working in institutions. Community staff are compensated at 62% of the institutional staff level.

"We are having a very difficult time attracting and retaining staff to provide current services. Service expansion will continue to exacerbate this problem. We must secure higher wages for our direct care staff before we can consider service expansion."

Oregon--Average salary ranges from $810/hour. Turnover is 70%. Provider organizations are fighting for a 25 cents/hour increase that was included in a past long-range plan.

In Oregon, big providers are getting bigger, as small providers disappear. Oregon's services continue for the most part to be provided by nonprofits. Only 5% of current services are provided by for-profit entities. State revenues are not growing at a rate sufficient to fully fund and maintain current services. The governor's current budget proposal reduces or eliminates more than $180 million in services. Within this context it is difficult to conceive of being able to persuade the legislature to attempt to solve provider problems related to inadequate provider rates, inadequate salaries, and high turnover.

Washington State--Average entry level wage is $8.24/hour. Average annual turnover is 68%. Average statewide vacancy rate is 7.9%.

The average wage of state employees providing identical community-based residential services is $11.30/hour, This is 34% more than private providers. Annual staff turnover for state employees is 10%. Vacancy rate for state employees is 2.2%.

Arizona--There are difficulties recruiting, hiring, and retaining good employees. Arizona providers are experiencing turnover rates ranging from 75%-150% and higher because they are unable to pay a competitive wage. Starting salaries are $7.00-$7.50/hour. Fast-food chains and retail stores start employees at $9.00/hour or more.

Workers in state-run group homes receive a starting salary of $9.21/hour.

Colorado--State institutional staff receive wages that are on average 46% higher for direct care, 62% higher for case managers, and 101% higher for program managers. Institutional staff average turnover is 13%, while it is 48% for service providers.

Nebraska--The governor recommended an addition of $7.3 million to the state budget to increase rates for providers of services for the developmentally disabled. The additional funding increases rates to 100% of established reimbursement and allows service providers to raise salaries for their employees, achieving parity.

Kansas--"We struggle with educating the public, and discussing policy with state officials and legislators, regarding the appropriate balance between risk and choice. One person's view of independence and integration may cause another to allege abuse, neglect, and exploitation."

Texas--Community-based providers report staff turnover rates from 45%100% and more. The state schools are reporting an average turnover in their 13 facilities of 35%, with some as high as 85%. TDMHMR has requested the Texas Legislature to provide funding to support a 3% increase in rates for ICF/MR and HCS providers. This will address, in part, the issue of staff recruitment and retention. If the request is funded it will allow providers to pay about $7.67/hour in wages. It does not even begin to address the inflationary costs providers have incurred over the last 2 and a half years.

The department is requesting a significantly higher increase for the same positions in the state schools. They want to be able to pay $8.97/hour, as a starting wage, that then goes up to almost $10.00/hour.

If the state legislature funds TDMHMR's request for expansion of HCS services, which calls for funding to serve approximately 4,429 persons, providers report that they will not be able to serve these persons unless a sufficient adjustment to the rates is made to cover issues related to staff wages and other inflationary costs.

Aside from the rate issue, there is the ICF/MR survey process. It has become increasingly negative in Texas, with the number of punitive actions by private providers increasing by almost 272% with regard to recommendations for 23-day termination, and a 33% increase in number of recommendations for vendor hold. Texas also has adminstrative penalties: the number imposed in Fiscal Year 1999 was zero, and in Fiscal Year 2000 was nineteen. When attempts were made to determine what has changed in surveyor expectations and in any rules, the only response is that they have "raised the bar."

Maine--Aside from adequate compensation for challenging work, and public awareness that direct support is as viable a career track as data entry or other computer-related skills, there is a need for good supervision. "Unless we can bring management practice into play with a goal of improving the quality of supervision we offer staff, we may lose people to other jobs, not because of pay or career awareness. It would be a tragedy to lose dedicated workers because we were not able to give them the supervisory support they need and deserve."

New Jersey--Although the state has required for the past few years that providers designate specific contract increases to direct care workers, providers still struggle to employ and retain individuals to work in the field. At a recent hearing held by the Assembly Health Care Committee, officials of the NJ Department of Human Services testified that 20 group homes remain unopened although fully funded and ready for operation. This is because community provider agencies are unable to recruit and hire direct care workers.

Pennsylvania--Over several years, and with considerable work, a broad-based coalition of provider, county, and advocacy associations formed a productive working relationship which allowed us to work together on the issue of recruitment and retention. After a Summit on Recruitment & Retention was held this year, multiple grassroots coalitions were developed, which are organizing more effectively at the local level. One focus of the coalition was the governor's office, with the result that in February 2001, the governor announced that $41.3 million in this year's budget will go toward addressing the recruitment and retention crisis.

Maryland--"We employ more than 32,000 people in community programs in direct support.

Our data show that the average direct support staff person is a person of color, works a second job, works in excess of 70 hours per week at the full-time job, is female, and a single mom. We have turnover rates that average 63%." The proposed budget gives a 1.5% overall cost of living adjustment. The rate of residential reimbursement will increase from $6.89/hour to $7.00/hour.

NOTE: In April 2001, the governor of Maryland approved a 5-year, $80 million initiative to raise the salaries of workers who care for the developmentally disabled.

Alabama--Facilities are working hard with the issue of sufficient quality workforce. One state facility workforce suggestion that was implemented was to change the shift to a 12-hour day, intended to stabilize working hours and improve individuals' personal time.

Florida--Shortages in direct care are stopping or slowing the opening of new facilities. No efforts or plans to comply with Olmstead have been made, probably due to the numerous lawsuits filed against the state in ICF and HCBW cases. The number of lawsuits is well over 2,000 and growing daily. The state has been working on redesigning a plan for a number of years. The proposed plan would cut current administration units by 40%, in an effort to cut costs.

In Doe v. Bush, a waiting list suit, the state was ordered to provide tens of millions of dollars per year over the last two years, with approximately $56 million proposed this year. The state is still being fined $10,000 per day for noncompliance.

Some solutions to the DSP Dilemma

Around the nation, states and nonprofit agencies alike have been feeling the the results of the shortage of reliable, long-term workers in direct support services. Some have taken innovative steps to defuse the situation:

According to an article that appeared recently in the New York Times, one nonprofit-run group home in Illinois, Trinity Services, Inc., has used incentives to keep staff--everything from cash bonuses and small raises for outstanding work to recognition for regular attendance, low-interest loans, flex-time, and other "perks."

In addition to its program which, since 1992, has placed more than 1,000 inner-city youths in summer jobs providing support to people with mental retardation across the state, Massachusetts' Department of Mental Retardation has started an all-out recruiting campaign to fill positions in direct support. As reported by the Associated Press, the campaign, called "Rewarding Work," attracted more than 3,000 prospective workers. The New York Office of Mental Retardation and Developmental Disabilities (OMRDD) has started using its Web site to promote employment opportunities around the state. By capitalizing on the easy access of Internet technology, OMRDD hopes making information available at the click of a button will attract many potential workers; the agency has plans to attract the attention of high school students to a career in direct support.