Impact Feature Issue on Consumer-Controlled Budgets and Persons with Disabilities

One of the greatest challenges in supporting people with developmental disabilities today is finding, keeping, and training people to provide direct support. While this challenge has become increasingly difficult due to an increased demand for services and changes in the demographic make-up of our society, it has been evident since the inception of community human services for people with developmental disabilities. It often results in poorer outcomes and poorer quality of services than individuals and their families should expect (Hewitt, Larson & Lakin, 2000; Larson, Hewitt & Lakin, in press). There is no doubt that to improve quality of supports and services to people with disabilities we must find solutions to the challenges of high turnover, increased vacancy rates, poor training, and inadequate compensation for people who work in direct support roles. Opportunities to do so may exist in the flexibility afforded to individuals and their families who control their own budgets and services.

Current Direct Support Workforce Challenges

One of the greatest challenges faced by provider organizations, individuals, and families is finding a sufficient number of reliable employees who will show up on time and when scheduled to provide direct supports. Many states have conducted studies of vacancy rates in direct support positions and these studies have found that vacancy rates for direct support professional (DSP) positions range from 6% to 17% (Larson, Hewitt, & Knobloch, in press). This means that on any given day about 1 out of every 10 positions in direct support is unfilled. The end result is that individuals and families likely either receive fewer services because there are not staff to cover the hours or they receive services from staff who are working many hours of overtime. In a recent evaluation of Home and Community-Based Services in Minnesota, it was found that only 46% of families reported they received the total number of hours of respite services they were allocated, and 56% said in-home supports were not available when needed (Hewitt et al., 2000).

A second challenge is low wages and inadequate benefits. It is well-documented that people in direct support roles earn low wages and have access to limited employee benefits. While a national study of this issue has not been conducted since 1990 (Braddock & Mitchell, 1992) several states have conducted independent wage and compensation studies. These studies (conducted between 1998 and 2002) were recently summarized across 42 states. They indicated that the average starting wage of DSPs in non-state community residential settings was $7.33 per hour and the average wage for all DSPs was $8.68 per hour. These community wage rates compare to much higher rates of pay in institutional and public facilities in which DSPs work and have an average starting wage of $9.49 and overall average wage of $11.67 (Polister, Lakin & Prouty, 2002). The availability of affordable health benefits to DSPs is also an increasingly important problem, especially given the rising costs of health insurance. Most employers do offer health care benefits but only to a portion of their employees and not necessarily at an affordable rate. Typically, employees who work full-time have the option of health benefits to which they contribute, but those working part-time are usually not afforded this option. Addressing problems associated with low wages and inadequate benefits is critical to resolving the workforce challenges. Currently, many DSPs earn less than the poverty rate for a family of four and cannot support their families unless they work more than one job (Larson et al., in press) and many raise families without access to health care. As a result many DSPs work stressed and burned out, tired and overworked – which puts them at much greater risk of maltreatment (College of Direct Support, 2003). Resolving wage and benefits issues is not only critical because of the effects they have on DSPs personally, but also because wages have consistently been shown to be the number one predictor of higher turnover rates, which negatively affect the lives of people who receive support services.

A third challenge is turnover rates (annual crude separation rates), which have consistently been shown to average between 45% and 70% since the beginning of community support services in the 1970s (Larson, Hewitt &  Knoblach, in press; Braddock & Mitchell, 1992; Lakin, Bruininks, Hill & Hauber, 1982; George & Baumeister, 1981). One of the greatest challenges is ensuring an accurate picture of national turnover rates across various service types. A national study has not been conducted since 1990 and those state and local studies that have occurred often do not gather turnover data using the same calculations and definitions. But, the bottom line is turnover is high, and that results in challenges for families and individuals. Imagine if you depended upon staff for medication administration or personal care, or for support so that you could go to work, meet other family obligations, be involved in your community. Further imagine that each year more than half of your employees left their positions. This would likely feel stressful and frustrating and it often results in bad things happening such as people with disabilities being left alone, parents having to quit jobs to care for their family member or people not getting the services they were determined to need.

A fourth challenge is staff training. The service system for persons with developmental disabilities has long had inadequate, minimal training requirements for DSPs. Service provider agencies often report that they do not have adequate money to support sufficient training of DSPs. DSPs also report that their training does not meet their needs, is inadequate to prepare them for their jobs as DSPs and/or is boring (Hewitt, 1998). Other challenges related to training include the difficulty in freeing staff from doing direct support to attend training and the lack of availability of training at times that are accessible to DSPs who work multiple jobs and varied shifts. While training is regulated in almost every state, the mandated minimal training barely prepares DSPs to keep people safe. The required skills of DSPs far exceed those provided in typical mandated training (Taylor, Bradley & Warren, 1996). While we struggle to get DSPs basic training, we need to provide far more training that is competency-based and offered prior to being given the substantial responsibilities of direct support. Without adequate training that focuses on the needs of the people being supported there is increased risk for people being harmed and maltreated.

The Direct Support Workforce and Individually-Controlled Budgets

The use of individually-controlled budgets and the related flexible support and service options available to individuals and families is a relatively new concept. It has been provided to only a small percentage of citizens with developmental and intellectual disabilities. There are indications from early evaluation studies in Michigan, Minnesota, New Jersey, and Oregon that direct support workforce issues such as wage, turnover, and recruitment difficulties can often be lessened by individuals who control their own budgets. Two states have reported that one of their main motivations for initiating individually-controlled budgets and self-management of services was in response to the workforce crises they were facing (Hennepin County, 2003; Walker, 1999).

Many individuals and families report that when they have control over who they hire and fire they are able to find higher quality personnel and use particularly committed people such as friends and family for support providers (Head & Conroy, in press; Walker, 1999). Studies also indicate that DSPs are often paid higher wages when they work for people who individually control their budgets (Hennepin County, 2003; Head & Conroy, in press; Walker, 1999). Additionally some families have reported they are able to actually get the services they have been authorized because they can find staff even when agencies say they cannot, and that they receive more hours of support than under agency-directed supports (Walker 1999).

There are numerous other benefits of receiving supports when individuals and/or families control their own budgets. Studies have indicated that people have more self-determination and control over many aspects of their lives beyond just staffing issues. For example, people can choose what they want to do more often and go the places they want to go more frequently. The implications for DSPs are that they have to have the skills needed to support people to make their own choices and to take risks.

Interventions and Solutions for Individuals, Families, Organizations

Irrespective of the type of services and supports people with developmental disabilities receive, it is critical that they have well-informed and stable direct support employees. If they are to be effective in controlling their own budgets and managing their own personnel, they need to use effective interventions to increase the probability that employees will be stable and effective employees (not unlike effective service agencies).

Because individuals and families who direct their own budgets have more flexibility, many have reported that they are able to pay higher hourly wages and have the flexibility to use fewer hours in order to pay higher wages. The removal of administrative fees and the “middle man” makes this possible. In addition to maximizing the wage of DSPs, it is important to ensure that when needed, DSPs have access to health insurance benefits. Purchasing these options through the fiscal intermediary/employer of record agency can make the benefits more affordable to the employee. Other benefits DSPs may receive are paid time-off for sickness, childcare issues, and vacation. It is important to plan for and include these costs into the person’s individually-controlled budget. Many individuals also add educational benefits as a part of the employee’s benefit package – paying for college education or other training opportunities. Other benefits can also include more creative options such as the use of bonuses. Some families have developed an outcome bonus system whereby employees are assigned specific outcomes that they support the individual to achieve; if the outcome is achieved, they receive a bonus on their annual gross earnings. Other individuals and families have created room and board situations for students so that by working to support an individual with a developmental disability for 10-20 hours per week they get free room and board. Families should be encouraged to think creatively about how to use their resources to shape individualized wage and benefit packages to meet the needs of their employees and maximize retention.

In order to keep good employees, it is also critical to hire the right people. There are several effective interventions individuals, families, and organizations can use to get the right people into direct support roles. One important intervention is to use inside resources to find potential employees. This means to use people who know the individual and/or the family to find direct support personnel. People who are “on the inside” are most likely to give potential new employees the “real scoop” about what the job is all about, and people who know what they are getting into are more likely to have met expectations and stay in their jobs after hire. Many people who direct their own budgets have found great success in hiring friends, family, and neighbors as their DSPs. One reason for this success is that they already know the individual and his or her situation and needs well – there are few surprises for the employee and an already established relationship. A second strategy to increase met expectations of employees is called realistic job previews. This strategy involves a systematic method of giving potential new employees realistic information about the job for which they are applying. Realistic information is defined as both the positive and not so positive aspects of the job from the perspective of others who currently do the job or have done the job (usually other direct support employees). This realistic picture should be provided to the potential new employee before a job offer is made. Individuals and families can share this information in many ways including short videos that show the person and what support providers do, picture books that illustrate a “day in the life of….”, a written script or document that the candidate reads or a day of observing other DSPs in action. In addition to including information about the job duties and role expectations it is important to include information about benefits, rules, and other information that those providing support feel is important to share with new DSPs. Whatever format is used should include a balanced vision of the job from the DSP perspective and be provided before the job offer is made.

Referral bonuses are another intervention strategy that can yield employees who remain employed longer. This strategy uses referrals of potential new employees from existing employees. If the person referred is hired then the existing employee receives a bonus. It is often helpful to provide a small bonus at the time of hire and then an additional bonus (usually larger amount) at 6 months and 12 months. This encourages informal mentoring from the DSP who referred the new hire.

When looking for a new employee, it is important for individuals and families to consider the characteristics of their most successful and long-term DSPs. Once these have been identified then the individual and/or family should purposefully seek other people with similar characteristics. For example, if they consider their best employee to be a young, energetic recent high school graduate then they should probably recruit this type of new employee. On the other hand, if they consider their best employee to be a stay-at-home dad who works for the individual on a part-time basis, then they are somewhat more likely to be satisfied by candidates with similar characteristics. This is called purposeful targeted recruiting.

Once an individual or family has decided they have found someone they want to interview, it is important they have well-thought-out, behaviorally-oriented interview questions that solicit information and examples of specific skills. This intervention strategy is called structured interviewing. Interviewers should never ask a question that does not purposefully seek information that tells them something about whether the interviewee has desired skills and attitudes. For example, if it is important that a new employee be flexible, tolerant of ambiguity, energetic, and not fearful of snakes then it is equally important that interview questions be developed to learn the extent to which the interviewee meets these conditions.

Direct support professionals have a lot to learn about when they begin a new job, especially if they have never worked in a direct support role before. Individuals and families play critical roles in providing orientation and training to new employees irrespective of whether or not the employee is working for someone who self-directs or is working for an organization. Orientation is an opportunity to assist and support new employees in getting to know the person(s) to whom they’re providing supports, their new responsibilities, and other employees with whom they might be working. When working in a family home it is important to learn about the family dynamics and expectations and to begin to feel accepted. Training, on the other hand, is an opportunity for employees to learn new skills they will need to provide adequate supports to the person(s) they have been hired to support. These skills may include healthcare treatments and medication support, behavior support to prevent challenging behavior, the use of adaptive equipment, community activities and organizations in which the person is a member, and other tasks. Generally, individuals and families are often the best people to teach these skills; thus, people who self-direct often report that they appreciate being able to deliver their own training. But, it is also important that supplemental training be identified for areas in which the individual and/or family does not feel adequately prepared as a trainer.

Other important day-to-day interventions include those designed to motivate and recognize employees for doing a good job. These can be simple “thank you’s” or notes of appreciation. They can also include formal recognition activities such as nominating someone for a local award or writing an article for a neighborhood newspaper about their community contributions. Ultimately, however, creating an environment of respect and appreciation is critical to the satisfaction employees feel and therefore their commitment to staying in their jobs and doing their best. Individuals and families know first-hand how important DSPs are to their lives – perhaps this is a unique reason why individuals and families who self-direct often report higher retention rates of their employees.