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Vocational Training for People with Prader-Willi Syndrome
Steve Drago
The Challenge
The standard of care for persons with Prader-Willi syndrome (PWS) has changed dramatically in recent years. People with PWS now are routinely diagnosed at an early age, the majority in the newborn period.
Physicians are better educated on the disorder, and effective treatment protocols are rapidly increasing. Hormone replacement therapies are resulting in people who are healthier, more energetic and robust, and who look “normal.” Many children with PWS are successfully main- streamed in school. Effective behavioral management strategies have been developed and are readily available. In contrast to even a decade ago, today residential placements exist that effectively manage the behavioral and weight issues of people with the disorder.
Because of these improvements in health care, education, and behav- ior management, more and more individuals with PWS of near normal or normal intelligence are living well into adulthood.2 As a result of the rapid improvements in both the length and quality of life, the bar of parental expectations has been raised. Parents are no longer merely concerned that their affected child will live to age 30. Instead, parents want—and expect—to see their son or daughter thrive, live a normal life, and be included in the fabric of their communities. More impor- tantly, the aspirations of people with PWS have changed as well. Many now expect eventually to live independently, in their own home with a spouse and pets (not necessarily in that order), and to be gainfully employed. Expectations for good health and for satisfying adult living situations are no longer unrealistic. In the continuum of effective serv- ices for people with PWS, successful job placements have evolved to the status of “the last hurdle” to be cleared. For this population, jobs remain the “fi nal frontier.”
Effective vocational placements are still diffi cult to achieve for people with PWS, despite extensive health and care improvements. There are several reasons why this is so. First, vocational providers have not had to live with the disorder; many are slow to understand the seriousness of the appetite and emotional volatility associated with the disorder.
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The truly debilitating nature of PWS is often diffi cult to grasp until time is spent working or living with an affected individual. One parent uses the analogy of alcoholism or drug addiction to describe her son’s dis- ability: “His drive to eat is just as strong and diffi cult to overcome as any other addiction.” Unlike someone addicted to drugs or alcohol, however, her son cannot simply stop imbibing or using. He must eat;
furthermore he must eat several times per day, in small controlled quanti- ties, and then stop. Unlike the alcoholic or drug addict, an individual with PWS is unable to simply adopt a new lifestyle by surrounding himself with people who do not use alcohol or drugs, or by avoiding places where these things are used. Everyone eats, and food is every- where in our society. Thus the stress on an affected individual is ubiq- uitous and constant. Until an employer achieves this level of understanding and appreciation of the disorder, job placements have a high likelihood of failure.
An employer’s effort to achieve this level of understanding is often undermined by fi rst impressions from meeting someone with PWS.
Usually prospective employers are initially presented with a mild- mannered, intelligent individual who is motivated to work. Many employers have employed other people with disabilities whose initial presentation did not signify either the capacities or the (apparent) social and intellectual skills initially observed in a person with PWS.
Therefore, when the person with PWS disappears from the work site to obtain food, or becomes argumentative with the boss, employers are most likely to see these behaviors as “merely discipline problems”
rather than as a natural manifestation of PWS requiring workplace adaptation.
An employer’s expectations for individuals in an adult work setting are different from those at home or in school. Schooling is an entitle- ment; as such, schools must adapt for the individual. By contrast, jobs are earned; the employee serves by the privilege of the employer.
Arguing and noncompliance, both frequent typical behaviors for someone with PWS, are not usually tolerated. An initial adjustment period is usually required, during which both employer and employee acquire new learning and skills.
The Continuum of Work Placement Options
Prior to discussing successful work placement strategies for individu- als with PWS, a discussion of work placement options and terminology is needed. Sheltered workshops are the oldest and most common type of job placement for workers with developmental disabilities. These set- tings offer job skills training in a nonintegrated setting. This means that the entire work or training force is made up of disabled individuals.
Individuals in sheltered workshops are paid on a piece-completed rate;
that is, they do not receive an hourly wage, but are paid for each piece of completed work at a rate comparable to that paid a nondisabled person. Typical sheltered workshop tasks include packaging and simple product assembly. Workshop placements are generally funded at the
state level by programs such as the Medicaid Waiver. Medicaid Waiver programs (available in most states) are state-run programs where the state is able to leverage matching federal dollars specifi cally dedicated to services for people with a developmental disability. In return, the programs must comply with established work and safety standards and rules for service provision and documentation such as those man- dated by the U.S. Department of Labor.
Work enclaves consist of small, nonintegrated groups of disabled indi- viduals who go into the community to perform service type work.1 Typical work enclave jobs are lawn maintenance, janitorial, and restau- rant work. Each enclave has at least one nondisabled supervisor. Indi- viduals in work enclaves are routinely paid an hourly wage. Because individuals in work enclaves are considered trainees, federal wage and hour regulations allow them to be paid at a rate less than minimum wage, as long as they are paid a percentage of the competitive wage equal to the percentage of work they perform (compared with that of a nondisabled individual). Thus, if a typical hourly wage for a nondis- abled person is $7.50, and the disabled person averages 60% work pro- ductivity compared with the nondisabled person, then the disabled person’s salary would be 60% of $7.50, or $4.50 per hour. Funding for work enclaves generally comes from state programs such as the Medicaid Waiver; however, some individuals may also be eligible for funding through the U.S. Department of Vocational Rehabilitation. The Department of Vocational Rehabilitation is a federal government program that provides services to individuals who are trying to work and who have a disability. While those with any type of disability may be eligible for funding through the Department of Vocational Rehabilitation, such funding is limited to only 180 days of employment (referred to as “employment stability”). During the employment stability time frame, the Department will pay for a large variety of sup- ports. If an individual requires support beyond the employment stabil- ity time frame, funding must be obtained through other programs.
Supported employment is a community-based job placement in an integrated work force; the other workers performing comparable jobs are nondisabled. Individuals placed in supported employment must receive a wage that is equal to or above minimum wage and compara- ble to that of nondisabled individuals performing the same job at that location. Supported employment is supervised by a job coach, who provides on-the-job training and acts as a liaison with the employer.
Ultimately, the goal is for the job coach to become less and less neces- sary over time until, ideally, the job coach is no longer needed. When this successfully occurs, the individual is said to be “competitively placed.” These placements are typically paid for initially by the federal government Department of Vocational Rehabilitation. When success- fully trained so that the job coach is no longer necessary, the employee becomes a “regular” employee of the host company. Employers may benefi t from tax incentives for hiring disabled workers.
The vocational services just described comprise a natural continuum of services. Individuals can progress from a sheltered workshop to an enclave, to supported employment, and fi nally, to competitive employ-
ment. The concept of a continuum of services has been under attack in recent years.4 Many argue that individuals should be placed initially at the optimal level of employment with needed supports to insure success provided in that setting. One obvious limitation to this approach is cost. Providing suffi cient supportive resources to train and maintain a consumer at the optimal level may exceed even the most generous state funding. Further, the assumption that initial assessment strategies are suffi ciently reliable and able to predict an individual’s optimal work placement is not supported by previous data. Standardized assessment tools frequently fail to assess individual needs, personality strengths and weaknesses, motivations, and individual “quirks” that impact job placement and performance. These individual characteris- tics frequently determine placement success or failure but often aren’t evident until the person is in the work environment. This is particularly true for those with Prader-Willi syndrome.
The Person with Prader-Willi Syndrome in the Workplace: Pitfalls and Successes
Challenges to Successful Vocational Placement
Because those with PWS are far fewer than those affected with other disorders such as Down or fragile X syndromes, most vocational service providers serve no more than one or two adults with PWS. The ARC of Alachua County (Gainesville, Florida) is an exception, currently providing vocational services to more than 50 individuals with PWS.
One staff member states: “We pride ourselves in being more knowl- edgeable than most providers when it comes to working with individu- als with PWS. In spite of this experience, we have not been spared the typical pitfalls. In fact, due to the sheer numbers of individuals with PWS we have worked with, we have probably encountered many more.” Several typical examples follow.
One of the fi rst issues encountered was getting individuals to work on time. Getting up and out of the house is often diffi cult for people with PWS. For many affected individuals, the early morning routine consists of one compulsive ritual after another. A parent who was having particular diffi culties getting her daughter to work on time attempted to circumvent these rituals by getting her daughter up earlier and earlier. The parent sought help from the vocational staff when she and her daughter were waking up 5 hours before it was time to go work each day, yet the problem continued to worsen! Getting up earlier and earlier was obviously not the solution. Rearranging the contingen- cies in the morning environment to make it more effi cient was. Mom was instructed to place breakfast at the end of the chain of morning requirements rather than in the middle. This hastened her daughter’s performance of the morning routine. Some fi ne-tuning was necessary to streamline the morning ritual, which remained somewhat lengthy but by no means 5 hours.
Food temptations are everywhere for those with PWS, causing some adults to lose their daily specialized transportation due to eating fellow
riders’ lunches. And, not unexpectedly, behavior issues occur when there is insuffi cient supervision of the vending machines and at lunch.
Further, those in sheltered workshop settings have been known to bring more and more possessions to work. A supervisor observed:
“One puzzle book for break time is acceptable; every puzzle book col- lected and completed during the past 5 years is not.” Other problems have occurred around returning from bathroom breaks on time and disengaging from one work task and beginning another.
Work enclaves encounter both the previous issues in addition to others that are unique to the nature of the job. The ARC of Alachua County vocational services are located in Florida, which has a warm climate year-round; as a result, lawn care is a major business opportu- nity. Many individuals with PWS select work on a lawn crew as one of their goals. Lawn work is hard physical labor. Many currently employed adults with PWS reached adulthood before growth hormone replace- ment therapy was available and thus have not benefi ted from this treatment. As a result, many lack the physical stamina required for lawn work. In addition, the summer sun may be medically contraindi- cated for the adult with hypopigmentation. Even those individuals who are normally pigmented may have increased photosensitivity and heat intolerance from psychotropic medications. The issue of job goals obviously has to be negotiated. The time and place for the negotiation are as important as the negotiation itself. It should not be done at a time when emotionally charged behavior is present. It should be done at a calm time in a professional setting and with respect for the choice the individual wants to make. Vocational staff should have a variety of alternatives to present.
Many individuals select and are valued members of janitorial crews.
Even so, crew supervisors report being constantly stressed and chal- lenged: “No matter how hard we scour the job sites for food access, individuals with PWS are better at it then we are. People will always have food in their desks, coffee creamer in the break room, and even edible Christmas tree ornaments during the holiday season.” Examples include a young man with excellent work skills whose heart was set on working with a janitorial crew. After several failed work trials, a con- tract to clean a large warehouse belonging to the Department of Trans- portation seemed the perfect work placement for him. After a 10-pound weight gain in 1 week, it emerged that the young man had located the storage space housing the entire Gatorade drink supply for local road crews. It was not possible to secure this area, nor was it possible to suf- fi ciently supervise the individual; as a result this placement failed.
Another man requested his own removal from an interstate highway rest area crew in spite of excellent work performance and zero weight gain. He reported that watching people throw away bags of partially eaten fast food all day was too much for him; he was afraid that the temptation was becoming too great. He preferred working elsewhere, even if it meant returning to the workshop.
As the previous examples illustrate, the biggest issue with supported employment is the unrestricted nature of the environment along with the lack of supervision. For many in these settings, maintaining dietary restrictions has to rely primarily on self-control. One young woman
was given a trial as a fi ling clerk with the Social Security Administra- tion, despite their initial reluctance to employ her because of her dis- ability. After the fi rst week, her work performance generated rave reviews. Her fi ling was excellent, she thrived on the repetitive task that quickly bored other workers, and she was making friends and was liked in the offi ce. She was terminated a month later for taking unex- pected breaks and for failure to return from lunch on time. An investi- gation revealed several fast food restaurants in close proximity to the offi ce. Since termination occurred without consulting the job coach, there was no opportunity to provide additional supports that might have made this placement a long-term success.
One applicant for services seemed, at fi rst, inappropriate. At the time of application, his proud parents reported that the young man was currently employed in the mailroom of a large downtown business earning a living wage. Further, he lived alone, rode buses around town visiting friends, and seemed from all outward appearances to have the ideal life. When parents were queried regarding the reason for disrupt- ing what appeared to be excellent supported employment services, they responded, “because he weighs 350 pounds and is near death due to congestive heart failure.”
While these examples illustrate that vocational placements for adults with PWS present specifi c syndrome-related challenges, these chal- lenges by no means preclude successful vocational placements. To assure employment success, however, employers must be aware of and address these issues prior to placement, must provide constant moni- toring of these issues after placement, and fi nally, must be prepared to deal with these challenges if and when they occur.5 It must be recalled that historically it was thought that the health, weight, and behavioral issues of people with PWS could never be successfully dealt with outside a hospital setting. With a growth in expertise, public awareness, and sensitivity concerning people with disabilities, these challenges have been met. Similarly, successful vocational placements will soon be the norm rather than the exception. The following guidelines may be helpful.
Structuring for Vocational Successes
The average profi le of those admitted to ARC of Alachua County’s Prader-Willi syndrome program is a person 20 years of age weighing approximately 255 pounds; 50% evidence signifi cant health prob- lems—including Type 2 diabetes, congestive heart failure, and sleep apnea—and all are challengingly intelligent. Characteristically, these individuals cannot be well served in a program that does not success- fully occupy their interests. In addition, many fi rst entering the program have physical limitations that present obvious and unique challenges.
Unstructured time frequently leads to food stealing, movement viola- tions (individuals leaving the work area), and argumentative, and eventually tantrum, behaviors. Untrained staff may inadvertently increase the possibility that any or all of these behaviors may occur.
Nonetheless, many people with PWS possess skills that are uniquely suited to the typical workshop environment. This is one reason that
many individuals choose this more restrictive work setting. Among these skills are an ability to perform repetitive, fi ne-motor behaviors without loss of interest. Experience demonstrates that assembly and packaging tasks frequently serve to direct and focus otherwise variable attention on the task, while precluding engagement in other more problematic behaviors, and that they are comfortably performed by those with limited physical abilities. Prior to undertaking these tasks, however, the person with PWS must be assured of a safe, food-free environment that is suffi ciently structured and supervised to prevent or respond to the most dedicated efforts to fi nd the “loopholes.”
Structure and expectations must be consistent and clear. At least two basic tracking systems (cash and food) are essential tools in a sheltered setting. In one setting, an individual’s cash is tracked at all times with reconciliation prior to and after work. All spending must have a receipt or a staff signature to be valid. Missing cash results in consequences.
Lunch box lists are included with every lunch individuals take to work.
Residential staff sign these prior to the individual leaving home. Food found in someone’s possession at work can be verifi ed against the list, which is turned in to the work supervisor upon arrival.
These tools are only as good as the staff trained to implement them and the consumers’ understanding of behavioral expectations under these rules. All direct care staff should be trained and certifi ed in the performance and implementation of these procedures. Com petency should be rewarded with salary increases. Prior to initiating work, expectations should be explained and agreed to by the employee and then consistently implemented. While this may seem obvious and only common sense, vocational placement success will only be achieved to the degree that consistent implementation is successfully achieved.
Some programs, in cooperation with living-care staff, view food steal- ing as a choice. Calorie allotments begin on arising and are tracked throughout the day. Individuals who engage in food stealing are viewed as exercising a choice to spend their calories on the items they have pro- cured. Incentives are employed to discourage exercising this type of choice, but it is recognized as a choice when it happens (and it will) and is treated in a dignifi ed manner. Calories are subtracted from the pre- scribed allotment and the business of work continues. When calories are gone, however, eating is fi nished for that day. Strong and consistent supervision is necessary to ensure this outcome. Similarly, clear, constant communication and cooperative programming with the living-care staff must be in place for such a system to be successful. When consistently implemented, these procedures minimize workplace problems.
For vocational efforts to succeed with these unique adults, environ- mental modifi cations and supports must ensure adequate supervision and consistent use of positive consequences. People with Prader-Willi syndrome are well grounded in the concept of what is “fair.” Inconsis- tencies across settings or even inconsistent application of consequences across settings are common causes of behavior problems. Programs that offer both residential and vocational services are ideal for provid- ing a comprehensive program of continuously integrated supports.
Because of the reactive nature of those with PWS, a program with a
proven commitment to positive behavioral supports has a greater like- lihood of success.3 In addition, the program must have an administra- tion dedicated to understanding the issues of Prader-Willi syndrome and must provide programmatic support designed by staff versed in behavior analysis.
Table 15.1 suggests questions for families to ask when they are con- sidering a vocational provider for their son or daughter with PWS. If
Table 15.1. Questions for Families To Ask a Potential Provider of Vocational Services General
1. Is the employment agency known for high-quality services?
2. How long has the agency been in business?
3. What is the depth of the agency’s experience supporting people with Prader-Willi syndrome?
4. How many people have been discharged from the program in the past year? Regarding those that have Prader-Willi syndrome, in general terms, what were the reasons for the discharge(s)?
5. With permission, can the prospective provider share names and phone numbers of individuals and their families who currently use the agency’s services and would be willing to be a reference for the agency?
6. Does the agency have any written materials about its services that we could take with us?
7. How can I obtain a copy of the most recent licensing survey, if applicable?
Staffi ng and Consultants
8. Describe the hiring process used when selecting staff.
9. Does the agency have ongoing training and expect that all administrators and staff learn about Prader-Willi syndrome?
10. What initial and ongoing training does the agency require of staff?
11. How are direct support staff supervised?
12. What is the turnover rate for direct support and supervisory staff? What is the average length of employment for a direct support staff at your agency?
13. How does the provider select and access physicians, ancillary medical services, behavioral consultants, etc.?
Policies
14. Does the agency keep records of service and progress individuals with PWS have made? If so, in what form do you display progress?
15. How does the agency handle health limitations of workers?
16. What are the agency’s policies regarding medication and its administration?
17. What contingencies are in place for medical and behavioral emergencies?
18. What is your agency’s relationship to the individual’s family or residential provider? Can or will it change based on the individual’s needs?
19. What is the frequency of communications with families? What if a family wants to know more/
less than is standard?
20. What issues are you mandated to report to parents/guardians?
21. What is your agency’s policy on family observation? Can families visit unannounced? What is the agency’s grievance procedure for the individuals and/or their families?
Program Issues
22. How does the agency modify assignments/settings to accommodate the food-related needs of an individual with PWS?
23. Does the agency create individual development plans to manage the behaviors associated with Prader-Willi syndrome?
24. How does the agency handle money issues for an individual with PWS?
25. How does your agency individualize services to meet varying needs?
26. What recreational or social activities are part of the work programming? Are the opportunities for participation individualized, accessible, and consistent? What happens when an individual chooses not to participate with the rest of the group?
27. What kind of transportation is available for the individuals’ use?
Table 15.2. Questions for Providers To Ask a Family Seeking Vocational Services General
1. What is your family’s expectation of this vocational placement? For example, do you consider this a transitional placement, or do you expect this to be your son’s/daughter’s permanent job setting?
2. Have you attended preparatory workshops regarding the range of vocational placements that are available for your son or daughter?
3. Where does the family see the individual best suited for success?
4. If you are not your (adult) son’s/daughter’s guardian presently, do you intend to apply for guardianship?
Background Regarding the Individual with Prader-Willi Syndrome
5. What are the career goals and type of work sought by the individual?
6. How much does the individual want to work?
7. What are the preferred hours of work?
8. Are there benefi t limitations to the amount of work an individual may do? That is, will any fi nancial entitlements such as SSI impose limits on the number of hours an individual can work?
9. Are there any medical limitations other than those associated with Prader-Willi syndrome?
10. Has the individual completed any vocational assessments through other agencies such as Vocational Rehabilitation?
Agency Policies and Staffi ng
11. Do you anticipate that you will have input into the agency’s decisions?
12. What are your expectations of how confl icts will be resolved?
13. How much involvement would you like regarding your child’s food and fi nances?
14. For what issues/incidents would you like to be contacted immediately? What is the best manner in which to reach you?
15. Do you prefer written or verbal communications from the agency staff? Barring any major incidents, how often would you like an update?
16. What are your preferred days/times for team meetings?
17. Do you have a relationship with your child’s current residential staff (if applicable)?
Program Issues
18. What are your preferred methods of managing the behavioral manifestations of Prader-Willi syndrome exhibited by your son/daughter?
19. What interventions have been consistently successful with your son/daughter? What other interventions have been attempted but proven unsuccessful for your child?
20. Are you using a behavior support plan currently?
21. Will you need assistance from agency staff with transportation?
22. Other than yourself, who else in your extended family can transport your child when needed?
23. Does your son/daughter have a religious affi liation? Which church/synagogue does he/she regularly attend?
24. How will your child’s prescription medications be secured, if necessary, and administered? Will the agency need to administer any of the medication?
25. What assistance, if any, would your family like in transitioning your son/daughter to their new work situation?
the agency lacks experience in working with Prader-Willi syndrome, the family should anticipate being very involved in the process to increase the possibility of a successful job placement. Table 15.2 lists questions that agency providers might want to ask families in order to gather important information about the individual with PWS and to establish open communications with the family as a foundation for a positive work placement.
Toward the Future: A Pilot Community-Based Program Model
Recently, the ARC of Alachua County identifi ed a need for an employ- ment agency that actively serves, trains, and places individuals with severe disabilities in jobs. The data at that point indicated there were at least 200 individuals in the local area whose work applications had been denied by other vocational placement and human service agen- cies. Most of these individuals required long-term, close monitoring and training to achieve vocational success. Among these were many persons with PWS. As a result, the ARC implemented a specialized employment agency for people with PWS. There are several specialty components in this pilot model, including education and recruitment of employers, a co-coaching training and support model, a temporary labor pool, and specialized skills training. Each component is discussed in more detail in the following paragraphs.
Education and Recruitment of Employers
The business recruitment and education component has been designed to provide potential employers with an understanding of the benefi ts of hiring people with disabilities. These benefi ts include, but are not limited to, lower-than-average turnover rates, punctuality and above- average attendance rates,5 prescreening of employees to help match potential employees with employers, a reduction in the cost to the employer for the employee’s salary during training, follow-along support for the employee, and the possible extension of ARC of Alachua County’s Sub-Minimum Wage Certifi cate.
Co-Coaching Training and Support Model
In addition to the traditional coaching model, the ARC overlays a co-coaching strategy, which entails identifying natural supports among current employees. This is based on the assumption that the co-coaching model will provide long-term, continuous support for the employee with signifi cant disabilities. The co-coaches provide support, continuous coaching, and communication assistance to people with disabilities in exchange for a weekly stipend.
As earlier indicated, people with PWS are extremely capable indi- viduals who often fail community-based employment due to excessive overeating and food stealing. The co-teaching model provides an employment specialist who identifi es and trains co-coaches to provide supervision and support to those with PWS in an effort to alleviate many of these problems. Individuals with PWS are very capable of learning to control these behaviors if they know people are there to help. The co-coaching model has been used very successfully with one participant supportively employed at a day care center for 6 months.
During this time, co-coaching provided by several co-workers helped control unauthorized food intake. This successful placement would have continued had not overall staff reductions at the day care center ended the employment.
Traditional placement accompanied by a fading of support services typically fails for individuals with PWS, whose needs are intense and unremitting. The success of this pilot co-coaching model suggests that many people with PWS may have increased vocational success utiliz- ing this continuous support model. This requires that stipend supports be ongoing with no fading. However, this minimal investment may mean the difference between the individual with PWS keeping and losing a job.
Conclusion
Progress in the fi eld of vocational services remains behind progress achieved in medical, behavioral, and residential supports for people with Prader-Willi syndrome. The reason for this lag is obvious: arrang- ing these environments for success is far more diffi cult, as their very nature lessens the capacity for controlling critical components. In shel- tered workshops there is not always consistency in the ownership/
management between residential and vocational service providers.
Typically, supported employment requires placing adults in someone else’s business whose good intentions may be eroded by behavior that adversely affects business. Nonetheless, progress has been achieved, and that progress can be directly attributable to successfully structur- ing the environment through staff training, physical modifi cations, and programmatic procedures. The “fi nal frontier” is defi nitely upon us.
References
1. Gold M. Did I Say That? Articles and Commentary on the Try Another Way System. Champaign, IL:Research Press; 1980.
2. James TN, Brown RI. Prader-Willi Syndrome: Home, School and Community.
San Diego, CA: Singular Publishing Group, Inc.; 1992.
3. Latham G. The Power of Positive Parenting. Logan, UT: P&T Inc.; 1998.
4. Lutfi yya ZM, Rogan P, Shoultz B. Supported Employment: A Conceptual Over- view. Center on Human Policy. Syracuse, NY: Syracuse University; 1988.
5. Wehman P, Kregal J. A supported work approach to competitive employ- ment of individuals with severe handicaps. Journal of the Association for Persons with Severe Handicaps. 1985;10(3):132–136.
