VCU 6/20/05 1:00 PM CT WEBCAST - PAS Presenter: Louis Orslene Captioning Provided By: Caption First, Inc. >> LOUIS ORSLENE: Good afternoon, everyone. My name is Lou Orslene, from the International Center for Disability Information based at West Virginia University. I come to you today to talk a little bit about personal assistance services in the workplace. Today's presentation is entitled "Making PAS Work for Your Clients." The objectives today that we hope to accomplish are: Know about the Center for PAS and its mission. Understand what personal assistance services are. Know the distinction between PAS for job tasks and PAS needed for personal care in the workplace. Know a little bit about the historic and current funding mechanisms for PAS. Know the current state of PAS in the workplace. And know what resources exist for learning more about PAS. Let's begin by talking about the Center for Personal Assistance Services in California. It's based at San Francisco, funded in 2003, has a five-year program grant from the National Institute on Disability and Rehabilitation Research. The Center for PAS team includes the Topeka independent living resource center, info use, the para-professional healthcare institute, the Institute for the Future of aging services, and faculty at the University of Maryland, University of Michigan, and West Virginia University's Job Accommodation Network. The center's activity is also steered by a blue ribbon advisory panel of PAS users, disability advocates, business leaders, independent living center leaders, and academics, who provide guidance to the project. The mission of the center is to provide research, training, dissemination, and technical assistance on the issues of personal assistance services in the workplace. The center fulfills its goal by providing research, training and dissemination on informal and formal PAS, PAS in the home and the community, PAS workforce and workplace PAS. The outcomes that we hope to achieve in terms of workplace PAS are: Establishing a baseline of PAS in the workplace; and identify and disseminate best practices for PAS in the workplace in order to facilitate the employment of people with disabilities. We are doing this research by interviews, surveys, and focus groups with employers, employees, and people with disabilities and also rehabilitation professionals. The workplace PAS component of the Center for PAS is being headed up by an organization called Info Use in Berkeley, California, with its principals, Susan Stoddard and Louis Krause. Let's talk about exactly what personal assistance services are. Personal assistance services refer to help provided to people with disabilities to assist them with tasks essential for daily living, and this is the definition -- the working definition that we use at the center of PAS. Just to let you know that the tasks of daily living include bathing, dressing, getting around, toileting, shopping, remembering things, and other activities. I'll also offer you another definition. This definition is from the Ticket To Work and work incentives program. PAS is defined there as a range of services provided by one or more persons designed to assist an individual with a disability to perform daily living activities on or off the job. That the individual would typically perform without assistance if the individual did not have a disability. I use this definition. I think it's important because it's important for you to know that personal assistance services are person-to-person services. PAS, along with assistive technology such as wheelchairs, text readers, hearing aids, help people with disabilities to participate in activities at home, at work, and in the community. In that sense, assistive technology complements PAS in the workplace. Assistive technology is not, in itself, personal assistive services, which are, again, person to person. What are workplace PAS? Workplace PAS include work-related task assistance and some of the examples that I offer here and have been offered by others are readers, interpreters, help with lifting and reaching, reassignment of nonessential duties to coworkers, et cetera. The second type of workplace PAS is workplace personal care related. This is helping someone to access the restroom, to help someone eat or drink while they're at work. It's very important to draw the distinction between work tasks and personal care-related PAS for one primary reason. In a word, funding. Often the type of PAS to be used dictates the sources of financial support you'll need to explore for your client. For instance, understanding the intersection of work task related PAS and the potential employer's ADA. obligation will help you to begin patching together the funding necessary for your client's PAS. Thus far in our research with employers, we find that the primary source of financial support for workplace in the workplace PAS is the employer. We'll talk a little bit later more about the ADA. and the employer obligation. More language that's important for you to understand is that of formal and informal PAS. It's a simple distinction but it's an important one. Knowing the language of PAS when assisting your client enables you to successfully structure the PAS arrangement. First of all, formal PAS is provided by a person who is paid. As simple as that. Informal PAS is provided by a family member, friend, volunteer, and it's just important that the person who is assisting the employee is not paid. In our research thus far, we've found that people with disabilities patch together the help they need in their lives, both with unpaid and paid help. I just wanted to sort of quiz folks out there, and see if you are getting these subtle differences between some of the definitions that I've offered so far. Let's look at which of these is not an example of personal assistance services in the workplace? Weekly manager monitoring of an employee about workplace behavior expectations? A personal assistant assisting an employee to dress for work? A family member coming into the workplace to assist an employee with lunch? A coworker filing forms for the employee? If you were thinking that number two was actually not an example of PAS, you're correct. A personal assistant assisting an employee to dress for work is not an example of workplace PAS. This is actually personal care. Let's try it again. Which of these are work task related PAS? A coworker reading daily memos to the employee? A family member, paid by the employer to travel with the employee on a business trip? Community access realtime translation, sometimes otherwise referred to as C.A.R.T. being used during an employee training? Or a coworker providing transportation to and from work? If you guessed Number 4, then you are correct. Number 4 is not a work related task. That is personal care. Transportation is the responsibility of the employee of course unless the employer typically provides transportation for other employees. Then it may be considered work-related PAS. Otherwise, it's personal. Let's again look at the language. Which of these are workplace personal care-related assistive services? A coworker helping an employee into the restroom? A personal assistant traveling with an employee to a training? A family member setting up the employee's lunch area? Or a personal assistant providing transportation to and from work? Again, we're talking about personal care-related instances. What I would tell you is if you've chosen Number 2 as being the outter there, then you're correct. Number 2 is not a personal care-related assistance service. A personal assistant traveling with an employee to a training is actually a work-related personal assistant. It's important for you to understand, to the extent of PAS usage in the workplace. According to work trends restricted access, a survey of employers about people with disabilities and lowering barriers to work, about one out of seven workers with disabilities describe the need for accommodation, while only about one in 100 have reported PAS needed for work. [It's] very, very important to note that while a small percentage of workers with disabilities relate needing PAS, it's imperative for these workers who have the requisite skills, abilities, and knowledge to be productive and successful with their jobs. PAS is very, very important to even those few people that find it necessary in order to work. Who uses PAS? It's also important for us to understand that. According to Bobby Silverstein, in his policy brief, the applicable of the ADA. to personal assistive services in the workplace, he writes, "Some people with disabilities have functional limitations that may create barriers to employment. For example, a quadriplegic may have the requisite education, experience and expertise to perform the essential functions of a job, but may be unable to perform nonessential job functions. Example, turning pages without assistance." In the past, when we spoke of employees using disabilities, often we were talking about people with severe disabilities that they've acquired early in life, but there's some changes going on in the workplace. According to The Center on an Aging Society, PAS is a part of the accommodation spectrum. There is currently a growing awareness of need for PAS at work. We're seeing as the population ages, that the PAS support needed for these aging workers is also increasing. We also know that PAS as a workplace accommodation is not as well-established as the concept of assistive technology in terms of the range of possible workplace accommodations. This is simply due to its more limited usage. Let's talk a little bit about the history of personal assistance services. This is not a comprehensive history of personal assistance services, but I've tried to include some of the major events during its history. This movement begins out of the Center for Independent Living movement in the 1980s. People like Judy Heumann and Ed Roberts were instrumental in bringing personal assistance services, particularly those services within the workplace, into the public arena. It made people much more aware of them. Of course they were based at the Berkeley Center for Independent Living at that time. In 1981, the home and community-based service, HCBC waiver program offered states federal matching funds to expand HCBS and accelerate the movement from long-term care provided in an institution. This is the first movement that we see for people moving out of the larger institutions and into the community-based programs. From our research so far, we've spoken to a number of people who receive these waivers in the early 1980s and continue into the workplace today. The next event is the Americans with Disabilities Act. It was passed in 1990, and progressively implemented up until 1994, where employers with 15 or more employees are covered. Next, we have the 1993 Omnibus Budget Reconciliation Act. This act de-medicalized personal care services by eliminating the requirement that services be prescribed by a physician by making nurse supervision optional and by providing those services. Those services could be provided anywhere, not just in the home. In 1999, the Ticket To Work Act was passed, and it included work incentives and encouraged states to adopt the option of allowing people with disabilities to purchase Medicaid coverage that's necessary for people to maintain their employment. In 1999, also, the Supreme Court case, Olmstead, occurred. In the court's Olmstead decision, the ADA. was upheld in the court, and the court ruled that unnecessary institutionalization constitutes unlawful discrimination under the ADA. In 2003, the Center for PAS was initiated by funding from the National Institute on Disability and Rehabilitation Research. In 2005, Senator Harkin proposed the national Medicare Community-based Attendant Services and Support Act, otherwise known as MiCASSA. He also proposed Money Follows the Person Act. There's also a Bush administration proposal in its new freedom Medicaid demonstration act that is also opening up more funding sources for personal assistive services in the workplace. Once you understand the language of PAS and you're aware of the usage of PAS to support people with disabilities in their home, community, and work, then you need to understand how to seek and obtain the funding necessary to sustain your client's personal assistive services arrangements at work. Let me review the funding streams for PAS in the workplace, as indicated by our research so far. First, we find that employers are taking up the obligation, and they're providing much of the personal assistive services under the Americans with Disabilities Act, the ADA. Second that we found out that considerable amount of people are being provided funding through the state Medicaid infrastructure grant called MIG, and that's under the Ticket To Work program. Next is the state Medicare waiver funding. We've also found that state VR agencies are direct-funding and people have line items within their budget and they're providing personal assistive service. Then lastly, we're finding that individuals with disabilities are supporting their own personal assistive services in the workplace. What we've also found is that in some cases, that the state vocational rehabilitation agency is funding so much of the personal care services. For instance, paying the personal assistant minimum wage, and then the individual with a disability brings that wage up to maybe eight or $9, and that increases the likelihood then that that person is going to stay in the job, so that the whole situation, the whole arrangement, is that much more stable. Let's talk for a minute about the Americans with Disabilities Act. Since we found in our initial study that most PAS is being paid for as an accommodation under the ADA., let's just do a quick review. Passed in 1990 and fully implemented with employers with 15 or more employers by 1994, the ADA. covers applicants and employers of both private and public employers, as long as the applicant meets the definition of "disability" under the ADA., and the person is qualified for the position. When these stipulations are met, then the employer may need to consider making reasonable accommodation to the known physical and mental limitations of an otherwise qualified applicant or employee, unless the employer can demonstrate that the accommodation would impose an undue hardship on the business. For the purposes of the ADA., a qualified person with a disability is defined as someone who meets the skills, experience, and education and other job-related requirements of the position held or desired with or without reasonable accommodation. They must be able to perform the essential functions of the job, of course. It is also important to mention that there is recognition that while the ADA. specifically addresses task-related assistance on the job, some people need both job tasks as well as personal assistance to succeed in the workplace. Many of these people, of course, have the requisite skills, knowledge and abilities, and they really do not need accommodation in terms of the work-related tasks. However, they do need, for instance, maybe someone to come in and set up lunch for them, someone to help them access the restroom, and possibly someone to assist them in getting ready to leave for work. It is recognized by employers that it is very important that we provide and enable the provision of personal care-related tasks in the workplace, even for those that don't need work-related tasks PAS. To understand a little more about the integration of the ADA. and PAS in the workplace, often we look to the Equal Employment Opportunity Commission who enforces the provisions of the ADA. The EEOC says in its interpretive guidance on Title I, the employment section of the ADA., that: "Providing personal assistance such as a page-turner for an employee with no hands or a travel attendant to act as a sighted guide to assist a blind employee on an occasional business trip may also be a reasonable accommodation." The EEOC also suggests that it may also be a reasonable accommodation to permit an individual with a disability the opportunity to provide and utilize equipment, aids, or services that an employer is not required to provide as a reasonable accommodation. I include this, again, just to make the point that many people do not need accommodation for their work-related tasks but they may need personal care in order for them to maintain and be productive in the workplace. The EEOC certainly stands by that. Let me offer a few workplace accommodation examples, and these are taken from the Job Accommodation Network. One is a law firm trained an existing legal secretary to read handwritten correspondence to a contract attorney who is blind and had no difficulty accessing text material when using the screen reading technology, but could not read handwritten correspondence. Another example from JAN is an employer who provided a travel assistant to be a sighted guide for an account executive based in New York City. The person is legally blind, and they're required to attend work-related training in San Francisco. One more example. A school district arranged for a coworker teaching in the same department to serve as a mentor for a newly hired geography teacher with bipolar disorder who had difficulty developing her work routine and at times exhibited inappropriate work behavior. Together, the teacher and her coworker/mentor review time and stress management techniques, discuss appropriate work behaviors, and develop strategy for adjusting to change. Those are some of the examples that we've pulled from actual cases of the Job Accommodation Network, just to make you aware of how this is really working in the workplace. From the ADA, let's talk a little bit about the MIG grants. Besides the employer-funded PAS in the workplace under the ADA, relatively new legislation has been put in place that increases grant funding. One such law is the Ticket To Work Incentives Improvement Act of 1999. The Medicaid infrastructure grants, otherwise known as MIGs were funded as part of the Ticket To Work program. They're administered through the U.S. Department of Health and Human Services and overseen by the Centers for Medicare and Medicaid Services. This grant program is specifically designed to provide grants to states in order to support people with disabilities that want to go to work. The distinct purpose of these grants is to increase the number of people with disabilities in competitive employment. To better understand what's happening and where, the centers for Medicare and Medicaid have designed an interactive web page so that you'd be able to find out what's happening on this issue in your state. If you look at the map in front of you, if you go to the centers for Medicare and Medicaid website, this page is interactive. The states in blue have been awarded personal assistance services demonstration grants. The states in green have been awarded infrastructure grants. The states in red have been awarded both demonstration and infrastructure grants. To find out information, contact information for these programs, simply go to the site and click on your state. Another funding source that we heard a lot about during our research are the state plans or the state waiver programs. We know that many states continue to analyze whether and to what extent PAS should be provided to individuals in the workplace under Medicaid either as a benefit under the state plan or as a service provided under a federal waiver. Again, the center for Medicare and Medicaid services is very helpful, so that we can see what is happening and where. If you visit the center's website, you can also find the state waiver programs and the demonstration programs. Again, simply by clicking on the state, you can see the name of the state waiver or demonstration program, and you can find the contact information. This enables you to go directly to the source and directly to the program to find out what's happening with those waivers and possibly if your client is eligible. Another source that we've heard of during our interviews and during our surveys has to do with the funding by state vocational rehabilitation programs. We found out that many of the states have built people and their PAS services directly into the state VR budget. Some of these PAS situations date back to the demonstration programs of the early 1980s. State vocational rehabilitation may support the PAS arrangement directly or serve to conduct the assessment for PAS and maintain the waiting lists for other programs. They're an important contact for you. They're an important resource as well. From the preliminary research that we've done with employers, rehab professionals, and people with disabilities, we find that workplace PAS is most often patched together by the employees in order to maintain their employment. We hear that workplace PAS is not only patched together in terms of funding, but also in terms of formal paid and informal PAS. We've heard, for instance, from people whose coworkers help to get off their coat in the morning. Then a paid personal assistant comes in to set up for lunch, and then a coworker assists with the person going to the restroom, or a family member comes in. Then again, at the end of the day, a coworker would help to put the person's coat on and help them to get to the transportation in order to get home. Let's quickly recap how people are patching together their PAS arrangements. Again, we've talked about employers under the ADA. From our experience, most PAS at this point is being provided under the Americans with Disabilities Act. Also, the MIG grants, the Medicaid infrastructure grants under the Ticket To Work. Then the waiver programs. State VR. Then the employee needing PAS often subsidized or supplemented a certain amount of money that's coming in from other sources. Also, don't forget informal PAS as well. All of these combine to make a more productive employee and a successful workplace personal assistive services arrangement. In addition to all of the legislation that's occurred since the 1980s, there was a Supreme Court decision that impacted personal assistive services in the workplace and that's the Olmstead decision. Implementation and compliance with Olmstead means promoting community integration over institutionalization and rebalancing long-term services and supports. With the Olmstead decision, the U.S. Supreme Court upheld the ADA. and ruled that unnecessary institutionalization constitutes unlawful discrimination under the ADA. Further the court said that as long as the individual agrees, treatment and personal supports and services of an individual with a disability must be conducted in a home or community setting over an institution, which is deemed appropriate and of equal or less cost. In addition to all of the legislation, we're also having pressure on the states from the Supreme Court to rebalance between long-term care in institutions, the community, the home, and the workplace. In some of the research that we've done so far, we wanted to see where exactly the PAS was occurring. Of course we looked at the center for Medicare and Medicaid website and looked at where the demonstration projects are going. But we also looked into some of the vocational rehabilitation agency data, and we looked at it from 2002, 2003, and 2004. We looked at the states with the highest usage. You'll see in front of you that these are the states. If you're someone who is just picking up the language of the personal assistance services, you're just coming to grip the the funding streams, and you identify that one of your states is on this list. There's certainly a a high likelihood of you being able to contact someone there. Find out if you can patch together some funding mechanisms in order to get your client personal assistance services they need in order to be in competitive employment. There's also new legislation. Of course this legislation has been written a number of times over the year. However, what you see in front of you on this slide, MiCASSA and money follows the person. These have been reintroduced in 2005. These legislative acts have been introduced by Senator Harkin and a number of other people have come on and are supporters of this legislation. Again, the intent of this legislation is to rebalance the long-term care of citizens with disabilities from institutional care model to more of a home-based and community-based model. MiCASSA gives individuals who are currently eligible for nursing home services and institutional facilities equal access to community-based attendant care services and supports. The legislation also provides for additional funding to states to help them reform their long-term care systems and increase the provision of home and community-based services. Of course that would include workplace PAS. Further, MiCASSA establishes a national program of community-based attendant care services and supports for people with disabilities. This is very important because as we've heard in the many interviews that we've done, that a clearinghouse, a central information source, is very necessary for people to understand all of the various things that they need to understand in order to patch these mechanisms together and patch this personal assistance services together for both home but also, in particular, for the workplace, which PAS is a little less known and is a little more recent innovation. Senator Tom Harkin from Iowa also introduced legislation called Money Follows the Person Act of 2005. This legislation would let Medicare money follow the person with a disability from institution into the community. It would provide a hundred percent federal reimbursement for all community services to individuals and their needs during the first year out of institution in nursing homes. What I've been trying to convey to you is everything that you need to know in order to provide those personal assistance services to your client, to make them much more likely to succeed in their employment placement at their job. Let's again look at these things. What do I think you need to know in order to move forward, along with your client or consumer? First of all, I think you need to know the language of PAS. Informal, formal, personal care related, PAS related. I think that's very, very important. Also know where to seek technical assistance concerning ADA. and where the ADA. intersects with PAS. That's very important. Also, know where to locate information about what PAS situations work and what doesn't. Know who to contact regarding your state's programs. Lastly, watch for legislative action. That's very important, because if we see the passage of MiCASSA and Money Follows the Person in 2005, then that's going to open up a whole new funding stream, and a clearinghouse. It's going to organize all of this somewhat better, to make it more accessible to you, more accessible to the person with a disability who wants to become employed. That could only be better for all of us. In terms of PAS resources, the one that I would suggest is the Job Accommodation Network. They provide practical PAS suggestions and they can also talk you through that ADA/PAS intersection. Also I'd suggest using the Center for PAS website. They have best and promising practices. Also, there's a Virginia Commonwealth University-produced consumer-directed guide to PAS. Lastly, subscribe to Steve Gold's listserv to keep abreast of changes on the national front. The Job Accommodation Network, while their website is an excellent source of information, if you really need one-to-one technical assistance to walk you through the process of providing PAS, then I'd suggest that you'd call their national toll-free 800 number. But on the website, if you go into their media and you scroll down through the page, you'll see that there's a personal assistive services in the workplace document. This document details the practical to-dos of developing PAS situations. This can be very helpful in enabling you to understand, for your particular client, how you can pool all of these things you need to, in order to create a successful PAS arrangement. Again, if you want to see what is happening out in the country, you want to see the successes and you want to understand what it takes in order to be successful in arranging PAS, then you want to use the Center for Personal Assistance Services website. If you go to the home page, you click on the first heading on the left-hand side of the site. It's called "State Information." There you'll find contact information for those who are responsible to administer your state's Medicare waivers and such. You have two places to go. You can either go to the center for Medicare and Medicaid, or you can go to the center for personal assistive services and look at their -- under their state information and that way, you'll have that contact information. You'll be able to find out what's working in your state, how it's working, how it's funded, and what you need to do to get your clients on that waiting list or into using personal assistive services. The Virginia Commonwealth University puts out an excellent consumer-directed guide. This guide provides good practical information about recruiting, hiring, and training a personal assistant. It also provides a sample contract form between the personal assistant and the person with a disability. Again, note that it's consumer directed guide. While you're the support person, you're the employment person, facilitating the arrangement of personal assistive services, that your client, your consumer, should be involved in every aspect of this arrangement, and really what you should be doing is getting them the tools they need in order to recruit and and hire a personal assistant, and for that contract to be drawn up between them. Also, of course, I should mention the training as well. Only the person with a disability is going to know what the level of support is that they need or don't need in the workplace. It's absolutely imperative that this process be designed in such a way that it really be consumer directed. What I would refer you again is to this VCU document, which will walk you through the process, give both you and your client the information you need to move to the next step. What I'd also give you is a resource. Steve Gold is a Philadelphia lawyer and advocate for people with disabilities, and I'm part of the listserv that he generates. This, too, I think, is a great resource for people. If you go to this website, you enlist in their listserv, then any new developments, whether it be MiCASSA, money follows the person, or any other changes that are bubbling up in this field, you'll be able to find through Steve Gold's listserv. Lastly, a lot of times your first step may be you'll pull this information off the website. There's a lot of information that you'll need to go through and to understand, but if you have questions and you really want to talk to a person and you really want to go and see how it's working, then the local resource that I would suggest is your local Center for Independent Living. There's a national project in Houston. It's the utilization project for the Centers for Independent Living. You can go to their website. You can find the state chapters. Then you can call them and they'll put you in touch with the local Center for Independent Living. [It's] very, very important that you have somebody in your community that you can talk to, that you can see it happening. That gives you a lot more faith and a lot more of the ability to see how this exactly works. Well, thank you very much for your participation in today's webcast regarding personal assistance services, and particularly those services in the workplace. I hope that the information I shared with you today better prepares you for helping the people you assist in finding and maintaining their employment. I also want to thank the TTAP program for enabling me to share this information with you today. Thanks again. ***