WATA Bulletin -- Winter 1999
Contents:
Moving from an Attendant to Assistive Technology
Sean Barrett, MSW, with Kurt Johnson, Ph.D.
I have worked for many years with people with disabilities in vocational rehabilitation, independent living, and now, assistive technology (AT). Recently, I have increased my personal use of technology substantially. A great deal of thought went into my decisions and I have come to understand that the decision making process I went through, and the outcomes I achieved, are very similar to those experienced by others in my position.
I have had juvenile rheumatoid arthritis for 27 years. My functional limitations have changed over the years, but for the past several years my primary limitations have been in strength and reach. For example, any tasks requiring me to manipulate objects or materials below my knees or above my shoulders are difficult to manage. Also, carrying or lifting even fairly light objects is difficult. I have learned that excessive lifting and other physical activity causes pain and soreness that can last for weeks and may even cause deterioration in my joints.
Attendants
In the past, I have employed an attendant to assist me with dressing, bathing, laundry, housecleaning, putting groceries away, etc. I paid the attendant approximately $330 per month. On top of my rent, car insurance and maintenance, student loan payments, and general living expenses, this was not trivial! Also, I found that I was dependent on accommodating my schedule with that of the attendant. For example, I like to sleep in on the weekends but my attendant had to be at her regular job by 8:00 AM on Saturdays, so she and I had to get up a couple of hours before that to ensure that I was dressed and bathed before she had to go to work. I decided to see if I could use AT to reduce my dependence on a paid attendant.
Starting the Process
My first step was to inventory all the tasks for which I required assistance from my attendant. It was important for me to be as specific as possible since I would need to determine whether an individual task could be modified so that I could do it independently, whether there was technology I could obtain which would allow me to perform it independently, or whether I would continue to require some assistance. This first, "functional assessment" is critical because of the wide variety of choices available and the expenses associated with the purchase of technology – having good data increase the chance that the solutions will be a good and economical fit.
Identifying Solutions
Once I had collected the data on the tasks of daily living, I began a general search for technology which could help me live more independently. I reviewed a number of catalogs, both mainstream and disability specific. I went to hardware stores, kitchen stores, and housewares outlets looking for off-the-shelf ideas because "mainstream technology" is likely to be less expensive than AT and easier to support. Finally, I consulted with a friend of mine who is an occupational therapist with years of AT experience (and is a user of AT himself).
As a result of this search, I found AT which has allowed me to eliminate my dependence on an attendant for bathing and dressing. I purchased a shower chair and hand held shower from Eagle Hardware and two adapted long handled/curved bathing brushes from an AT catalog. These devices allow me to shower independently. I also purchased a dressing stick, a sock aid, and an extended handle hair brush which allow me to dress independently.
Implementing and Modifying Solutions
The first morning I bathed and showered independently, I realized that I needed to rethink the process of using the AT, organization of my clothes and some other areas of my apartment to increase the efficiency of my activities and reduce the energy demands. For example, I bought a couple more reachers and grabbers and distributed them around the apartment, and reorganized the kitchen to make it more accessible for me.
It became clear to me that although I could theoretically gain independence in housekeeping and laundry, it would not be "cost effective" in terms of either money or energy. This is an important point in considering AT: just because a task may be performed using AT does not mean it should be! Sometimes it is more economical and more practical to use a people solution.
Outcome
The total cost for all of the AT I purchased was about $350. Housekeeping assistance costs me $120 per month. You can see that it has taken less than two months of not paying my attendant to pay for the AT and I now realize about $210 a month more in spending money.
Clearly, each person’s situation will be different. The principles, however, should be similar. These include doing a complete and in depth task analysis of the activities you want to address, considering all the options including specialized AT, off-the-shelf AT, and "no tech." As part of this, you need to honestly assess the cost-effectiveness of AT vs. "people" solutions since it may be more efficient to pay for assistance.
Legislative & Policy Update
Frances E. Pennell,
Policy Funding & Systems Change Specialist
State Legislative Session: The state Legislature is in its third week and is considering a several bills of interest to AT users:
Sales & Use Taxes on DME: Once again, the legislature is considering the elimination of sales and use taxes on medical equipment and motor vehicle modifications. There are three separate bills with multiple co-sponsors – meaning that the issue should get a good "airing" this session. The vast majority of states do not tax sales of medical equipment. Some states also have eliminated the sales tax on other selected types of AT – for example, CCTV’s, FM devices, and adaptive computer equipment. Because these are low volume items, the fiscal impact on state budgets of adopting these broader exclusions is likely to be minimal.
Chip Program: The legislature is examining two different Children’s Health Insurance Program ("CHIP") proposals. The Governor’s proposal would authorize the Medical Assistance Administration to design and implement the program as either: (1) a Medicaid expansion to serve children between 200 and 250 percent of the Federal Poverty Level; (2) a brand new program to be designed by DSHS and/or (3) some combination of a Medicaid expansion and a new CHIP program. The other proposal, by Representative Parlette, Co-Chair of the House Health Care Committee, would serve children who have a "special health care need" defined to include chronic illnesses that are lifelong and others that can be improved but only with substantial treatment. Representative Parlette’s program would be administered through the Basic Health Plan but hopefully would include additional benefits.
BHP Benefits: Representative Eileen Cody, Co-Chair of the House Health Care Committee, has introduced a Bill that would add orthotic and prosthetic services, occupational therapy, speech therapy and physical therapy to the list of covered BHP services. Currently, the BHP does not cover any of these services – i.e., it will pay for surgery to amputate a leg but not the prosthesis needed to maintain mobility afterwards.
Vehicle Modifications –Injured Workers: A bill authorizing the Department of Labor & Industries to pay for modifications to vehicles owned by injured workers who have become amputees or paralyzed due to an industrial injury also is being considered. The benefit would be available to any "otherwise eligible worker" regardless of the date of injury.
Patient Rights: Senator Thibaudeau, Chair of the Senate Health and Long Term Care Committee, has introduced legislation to establish a patient bill of rights. Among other things, the bill would establish a uniform definition of medical necessity, require health plans to maintain adequate provider networks and grievance procedures and provide for outside review of health care denials by independent agencies within strict time limits.
Electronic Information Technology: The Department of Information Services is proposing that state agencies be required to develop information technology portfolios to guide technology purchases. DIS would be responsible for writing appropriate standards. As introduced, the Bill is silent on the important question of how the needs of individuals with disabilities will be addressed when agencies make their technology purchasing decisions. The Secretary of State is requesting funding for a task force to study the feasibility of Internet voting. The Task Force would include people with a range of disabilities and would specifically address the question of whether Internet voting would make it easier for people with disabilities to cast a secret ballot (as promised in the State Constitution!) WATA is currently working with the Secretary of State and the Washington Council of the Blind to encourage the adoption of accessible voting technologies. At least two vendors already offer devices that can be independently used by voters with mobility and/or visual impairments. These vendors are applying for certification in Washington state.
The Other Washington: AT has made its way to the "mainstream" of federal policy-making! In mid-January, the President announced a substantial proposed expansion in federal dollars for assistive technology! In a press conference on workforce initiatives, the President stated that he intends to double the Federal Government’s investment in AT. He also wants to provide funding for states to provide or expand low-income loan programs to help more people afford AT, increase the government’s commitment to AT research and development and encourage the Federal government to become a model user of assistive technology. The President also proposed a $1,000 tax credit for workers with significant disabilities to help defray costs associated with work including transportation, personal assistance and assistive technology expenses.
In making his announcement, the President referred to the "amazing displays" of AT he had just seen – " a portable computer kiosk that helps people with disabilities vote or find a job, to the latest voice recognition software that lets you use a computer without touching a keyboard, to a new generation of mobile telephones that connect directly to hearing aids, to a device to immediately translate music into Braille" and went on to note that "[t]his kind of "assistive technology," as it is called, will empower people as never before."
The President’s budget also will provide funding for a new long-term care initiative (including $1000 tax credits for families with members who need long term care and a national Family Caregiver program which will offer respite care and other support services) as well as the Work Incentives Act, a bi-partisan Bill designed to make it easier for people with disabilities to obtain and retain employment. Other action "on the hill" will include continued work on various patients’ rights bills as well as continued efforts by Washington’s delegation to amend Title XXI to allow Washington to use CHIP funds to serve the estimated 90,000 children in this state under 200 percent FPL who are eligible for, but not enrolled in, Medicaid. By the time this bulletin arrives at your door, the Department of Education also should have issued its final regulations implementing the 1997 amendments to IDEA. Look for them on the Web at http://www.ed.gov/offices/OSERS/IDEA/.
For more information about these bills, please visit WATA’s website at http://wata.org. We welcome your questions and input. Please call or email Frances Pennell (fpennell@u.washington.edu) at the Assistive Technology Resource Center.
Calendar of Events
Duncan Seminar, Teens with Disabilities: Successful Transition to Adulthood - March 5, 1999, Shoreline, WA.
Children's Hospital and Regional Medical Center is conducting the annual Duncan Seminar. This one-day conference will address solutions and resources for funding, policy, health care and technological issues facing teens with disabilities. Consumers, family members, and interdisciplinary service providers are encouraged to attend. Continuing education credits are available. The cost is $85 for professionals and $50 for consumers and family members. For further information, please contact (206) 527-5706, ext. 2.
Technology and Persons with Disabilities, CSUN’s Fourteenth Annual, International Conference - March 16-20, 1999, L.A. CA.
A comprehensive international conference where all technologies across all ages, disabilities, levels of education and training, employment, and independent living are addressed. For more information, contact the Center on Disabilities, California State University, Northridge, 18111 Nordhoff Street, Northridge, CA 91330-8340 or visit their web site at http://www.csun.edu/cod or email at Itm@csun.edu.
Improving Employment and Education Outcomes for Individuals who are Deaf, Hard of Hearing, Late Deafened and Deaf Blind – April 21-23, 1999, Seattle, WA.
The 5th biennial Region X Symposium on Rehabilitation and Deafness brings together a variety of professionals who seek to improve education, employment, and independent living outcomes for individuals who are deaf, late deafened and deaf blind. For more information, please call Cheryl Davis at (503) 838-8642 V/TTY or email at nwoc@wou.edu.
RESNA ‘99, Spotlight on Technology – June 25-29, 1999, Long Beach, CA.
This conference will provide an informative, thought provoking, educational forum for a diversity of presentations, including: instructional courses, scientific and interactive poster papers, concurrent sessions, computer tech and environmental control systems labs, and much, much more! For more information, please contact RESNA at 1700 North Moore St., Suite 1540, Arlington, VA 22209-1903, (703) 524-6686 or (703) 524-6639 TTY.
For a more up-to-date schedule of events please check http://wata.org/highlights/calendar.htm