AT ADVOCATE
Newsletter of the National
Assistive Technology Advocacy Project
A Project of Neighborhood Legal Services, Inc.
295 Main Street, Ste. 495 · Buffalo, New York 14203 · (716) 847-0650
(716) 847-0227 FAX · (716) 847-1322 TDD · e-mail: nls01@sprynet.com ·
Web Page: http://www.nls.org
Supported by the National Institute on Disability and Rehabilitation
Research,
U.S. Department of Education, Through a Subcontract with United Cerebral Palsy
Associations.
Volume I Issue 4 October 1996
ASSISTIVE TECHNOLOGY
ENDLESS POSSIBILITIES
Copyright 1996, Neighborhood Legal Services, Inc.
[This month we have written two separate articles that address two related themes. The first article, "AT: It's Not Just Wheelchairs," encourages advocates not to limit their assistive technology (AT) advocacy to familiar issues. The second article, "Where Are the AT Issues Hiding?", addresses a concern that many advocates in the Protection and Advocacy (P&A) or Legal Services networks may not work on AT cases because the cases do not come to them.]
ASSISTIVE TECHNOLOGY:
IT'S NOT JUST WHEELCHAIRS
It appears that all of the Protection and Advocacy for Assistive Technology (PAAT) programs are working on wheelchair cases, most of which involve Medicaid as a funding source. Also, P&A and Legal Services advocates who have handled only a few AT issues have typically been involved in wheelchair cases. Certainly, a significant percentage of administrative decisions we have collected, nationwide, involve Medicaid funding for wheelchairs. The purpose of this article is to get advocates thinking about a wide variety of devices when you think of AT.
EXPAND YOUR DEFINITION OF AT
The definition you use for AT often depends on the disability with which you are working.. The more involved you are with a specific disability, the more likely you are to narrow your working definition of AT to fit that population. For example, if you see mostly adults with spinal cord injuries, you may think of AT as wheelchairs. If you see mostly children with visual impairments, you may think of AT as computers.
Your working definition may also vary with funding sources. Typically, the definition of AT relates to the purpose of the program or funding source. For example, when you work with Medicaid, you face a definition that relates to medical needs. When you work with special education, you face a definition that relates to educational needs. We should all use an expansive definition of AT. If we work with persons with severe physical disabilities, we should not think of AT only as wheelchairs. We should think of other devices the person can use, large and small, to achieve their highest degree of functioning and independence.
A funding source may offer a very restrictive interpretation of what AT devices it will cover. However, unless they can point to controlling laws or regulations to justify the interpretation, do not be quick to take their word for what they cannot do. Also, be careful not to apply your own restrictive interpretation of AT to limit what might be available to a person with a disability.
The remainder of this article summarizes several Medicaid fair hearing decisions which have approved a variety of devices, other than wheelchairs, for persons with disabilities. If you would like the full text of one of these decisions, call us at the National AT Advocacy Project.
CASE HISTORIES
In Re Anonymous, NLS FH-0049 (Maine 1995), involved a 30-year old man who has diabetes and is legally blind. His state's Medicaid agency provided him with a glucometer so he could monitor his blood sugar level. Because he could only read the glucometer with the help of a neighbor, who was often not available, his physician prescribed a voice synthesizer for the glucometer.
Medicaid denied approval, claiming that the voice synthesizer was not "primarily and customarily used to serve a medical purpose" and "not generally useful in the absence of illness or injury." Despite policy in the state's Medicaid manual suggesting that this specific device is not approvable, the Administrative Law Judge (ALJ) approved funding, pointing out that the cost of the voice synthesizer (about $200) "was inexpensive in relation to the alternatives which would include occasion-al in-patient hospitalization or on-going out-patient services."
D.R., NLS FH-0014 (New York 1995), involved an active two-year old who suffered recurring bouts of asthma. His mother could not keep him in bed in an oxygen tent. His doctor prescribed an air conditioner, claiming it could control D.R.'s environment while allowing him to move about his bedroom. Medicaid denied approval.
A provider loaned the family an air conditioner. Its use hastened a significant improvement in the child's condition as evidenced by fewer trips to the emergency room. The doctor monitored D.R.'s reaction to the air conditioner and wrote that "it still remains my professional opinion, as [D.R.'s] treating physician that an air conditioner is medically necessary to help prevent, alleviate, and allow [D.R.] to maximize a normal functional capacity for a child his age." This language helped persuade the ALJ to overrule Medicaid's denial.
S.K., NLS FH-0118 (New York 1990), involved a 17 year old, who was nonambulatory and spent most of her waking hours strapped tightly in a wheelchair. She had poorly controlled seizures, marked cerebral atrophy and dementia. When she had a seizure, she had to be removed from her wheelchair immediately and placed in her bed or on the floor.
S.K.'s doctor designed a "workpositioning area" that resembled a six-foot long, mesh playpen. Its design allowed freedom of movement and access to her family and surroundings. S.K. wore out her first workpositioning area. Medicaid denied prior approval for the second unit because it "does not cure, correct, or alleviate [S.K.'s] medical condition and is used primarily for non-medical purposes. "
The doctor indicated that this item would provide a safer environment because of frequent and unpredictable seizures and provide beneficial stimulation by allowing her to interact more with others. At the hearing, witnesses established that the work position area facilitated therapy, contributed to the improvement of S.K.'s motor skills and enhanced her capacity for more normal activity. The fair hearing decision awarded funding for the work positioning area.
M.J., NLS FH-0052 (Vermont 1995), involved a two-year old girl diagnosed as having a severe sensori-neural hearing loss. Her mother sought Medicaid approval for an FM system hearing aid and batteries which must be replaced every 10 to 14 days. Both were initially denied, but the FM system was approved after M.J. sought a fair hearing.
The ALJ approved funding for the batteries, observing that the state's regulation, which specifically excludes hearing aid batteries, is in direct conflict with the applicable federal regulation. The ALJ referred specifically to 42 C.F.R. § 440.110(c)(1) which provides as follows:
"Services for individuals with speech, hearing, and language disorders" means diagnostic, screening, preventive, or corrective services provided by or under the direction of a speech pathologist or audiologist, for which a patient is referred by a physician. It includes any necessary supplies and equipment. (emphasis added)
[A copy of the supporting brief, submitted by the Vermont P&A, is also available from the National AT Advocacy Project.]
Matter of Alice, NLS FH-0054 (New York 1990), involved a woman with multiple sclerosis who is quadriplegic. Her doctor requested approval for a voiceactivated environmental control unit (ECU). This request was denied because the device is "not covered under [Medicaid] because it is used primarily and customarily for non-medical purposes or is not generally accepted by the medical profession as being therapeutically effective." The ALJ overruled Medicaid and awarded funding for the device. Evidence presented at the hearing established that the ECU's support functions are essential to the maintenance of health and safety in the home. [See also In Re Anonymous, NLS FH-0077 (Minnesota 1993), approving Medicaid funding for an ECU to allow telephone access and to activate an alert system to call a personal care aide for assistance.]
CONCLUSION
These case histories are examples of some unique items of AT which have been approved following hearings. We hope our readers find one or more of these examples to be helpful to your advocacy efforts, and we encourage you to call us if you would like a copy of any of these decisions. We also hope that you will send us copies of your decisions and supporting papers so that we can add them to our resource directories.
WHERE ARE THE
AT ISSUES HIDING?
Imagine that you stumble upon an interesting cluster of rocks. You pick up several and examine them closely noticing their distinct size, shape and color. Later, you discuss your find with a friend who knows something about rare gems. He mentions a rare gem that is found only at the core of rocks resembling yours and explains that the gem has qualities that will benefit many people. How would you feel at this moment? Most people would be excited, but irritated that they were ignorant of what lay right before their eyes.
Many advocates do not look for assistive technology (AT) issues. They stumble upon them. And like the person who finds the rocks, often do not know what they have stumbled upon. This article seeks to help readers develop a sensitivity to AT issues to help you identify them when they are not clearly presented. We discuss where these issues are likely to appear and where they hide. Hopefully, you will find some interesting gems hidden from your view!
AT ISSUES: SOME MAY BE RIGHT IN FRONT OF YOU
Those of us who are funded under the Protection and Advocacy for Assistive Technology (PAAT) grants are expected to work on AT issues. However, many of our readers work on other P&A grants or in Legal Services/Legal Aid offices where AT issues have not, historically, been a priority. Since the individuals and families they see do not bring AT issues to their attention, these advocates may assume they do not exist.
When do advocates spot AT issues? A man seeks the help of a Legal Services office to prevent an eviction. He is pushed into the office in a manuallyoperated wheelchair. An elderly woman who faces a utility shutoff for non payment comes to a Legal Services office and tells of her adult daughter who needs that electricity to run a ventilator. A young woman who is getting divorced states that the child support payments she receives are too low. We then learn that she needs special computer equipment for a son who is blind. In each case the AT issue is secondary to a traditional housing, utility or family law problem.
In each instance, the Legal Services advocate has traditionally assisted with the presenting problem. Will he or she also assist with the AT issue or seek out other AT issues? In the first case, we should encourage the man to seek Medicaid approval for an electric wheelchair and come back to us if it is denied. In the second case, we can arrange for the utility company to continue service if your state has special public utility rules, as exist in New York, which apply to persons with lifesustaining equipment or specific medical needs. In the last case, we can point out that the special education system may be required to purchase the computer equipment. With a probing inquiry, we may learn that even more AT issues are present in each case. We may also want to identify for the client a non-traditional federal or state-specific funding source for the AT.
Unfortunately, many advocates have a narrow view of their job and would not have seen these AT issues or potential solutions. Like the advocates in these hypotheticals, you also come in contact with many people each day. Depending on your work, you may be alerted to issues by case managers, social workers, discharge planners, therapists, doctors, equipment vendors, other advocates, persons with disabilities or their family members. Frequently, the AT issue is presented as a secondary problem or not presented at all.
WHERE DO POTENTIAL ISSUES HIDE?
Like the rare gems hidden within the rocks, not all issues announce their presence. Sometimes they lie beneath a larger problem. For example, Betty, a 39 year old woman who once did architectural drafting applied for Social Security Disability (SSD) benefits because her arthritis did not allow her to do that work any more. The SSD claim was denied and a P&A or Legal Services advocate represented her at a hearing. After winning the appeal, Betty explained that she would like to return to school and wondered if she might be able to do something with computers despite the arthritis.
The advocate referred Betty to her state's vocational rehabilitation (VR) agency. The VR agency provided her with an AT assessment, found her a good candidate for computer assisted drafting and agreed to pay for her education to pursue that goal. The VR agency also agreed to pay for hand controls on her car because she is no longer able to operate the pedals. The VR agency would not pay for a personal computer for home use, claiming that Betty can use her college's computer lab. This last issue was referred to an advocate at the regional Client Assistance Program (CAP), which is funded to assist people in disputes with VR agencies.
The advocate advised Betty that she may be able to use SSI's Plan for Achieving Self Support (PASS) to pay for those items which the VR agency cannot fund. The PASS may help Betty pay for a newer vehicle if the present car is not suitable; pay for tuition costs that go beyond the VR agency's limits; or purchase computer equipment not available through the VR agency.
Are we done advising Betty of potential AT funding sources that will allow her to return to work and lead a life of independence? Our inquiring advocate also learns that Betty does not have the strength in her legs to go from class to class on a college campus. The advocate advises her that Medicaid should be able to pay for a wheelchair, even if she is able to walk short distances without assistance. Finally, the advocate advises Betty that, pursuant to the Americans With Disabilities Act, a prospective employer might be required to provide special equipment to her as a reasonable accom-modation.
What if Betty came to you? Would you spot the AT issues and give her appropriate advice and referrals? If a funding source balked at paying for a needed item, would you advocate for her? Would you refer her to your state's PAAT program or to another advocacy office for assistance? You must make it your business to identify whether AT is an issue and take the appropriate steps to assist Betty or refer her to an agency which can provide the assistance.
Consider this example, based on an actual consultation with New York's PAAT program. A couple is getting divorced and the father is about to agree to pay the mother $300 per month in child support for the couple's son who has cerebral palsy and uses a wheelchair. The mother's attorney calls you for advice and asks two questions: 1) how will the $300 in child support affect the child's SSI benefits? 2) is there a funding source available to pay for a ramp on the mother's home?
There may be any number of possibilities to fund the ramp or other items of AT that this child may need. Some may be unique to your state or even to your county or municipality. Assuming no other funding is available, consider the following creative solution.
You advise the mother's attorney that, under SSI rules, two-thirds of the child support money will be counted to reduce the SSI check by $200. 20 C.F.R. § 416.1124(c)(11). You then point out that if the father agreed to pay the $300 per month for a period of eight months directly to a contractor to install a $2,400 ramp or other item of AT, the SSI program would not consider this as income to the child and the son's SSI check would not be reduced. Thus, with creative planning, we help the divorce lawyer create a $1,600 subsidy to help pay for needed AT.
CONCLUSION
AT-specific funding has been available to the P&A programs since 1994. However, these grants typically range between $40,000 and $100,000 per state and are not enough to provide the wide range of advocacy services that is otherwise available through P&A, Legal Services, Legal Aid and other publicly-funded advocacy programs. As your office considers its priorities for service, give strong consideration to AT advocacy as either a new priority or a bigger priority for the future.
MEDICAID AND AT: WHAT SHOULD
BE IN A GOOD DOCTOR'S LETTER?
To assure that AT is approved, it is best to submit a letter of justification explaining why it is medically necessary and how it is the least costly alternative. This letter should summarize the person's condition, the requested AT, the exploration of other alternatives and why they were rejected, and the effect of the requested equipment on the applicant's home life, employment, education and medical needs.
Additional supporting documents may be provided from other doctors, occupational and physical therapists, nurses, home health aides, psychiatrists, psychologists and counselors. Letters of support should be written on letterhead, summarize professional qualifications, recite the length of time that the writer has been working with the person, describe the diagnosis and prognosis, and explain clearly and simply, in compelling terms why the equipment, in his or her professional opinion is medically necessary.
Letters of support from other sources, including schools, employers, case managers, family members, relatives, personal care aides and neighbors can also speak to why the person needs the AT for matters of safety, independence, maximizing potential and conducting activities of daily living. On the facing page, we have included an abbreviated version of a letter of support
CHILDREN'S HOSPITAL REHABILITATION UNIT_______________
26 Any Street · Some City, New York 10000 · (800) 555-1000
October xx, 1996
Reviewing Doctor
Medicaid Prior Approval Uni
584 East Avenue
Some City, New York 00000
Re: Simone A.
Dear Doctor _________:
I am writing on behalf of Simone A, age 14. Please accept this letter in support of Simone's request for a {name model} motorized wheelchair.
I am a pediatrician specializing in rehabilitative medicine. I teach pediatric rehabilitative medicine at _______, and I have been published several times in ________.
I have treated Simone since age 2. She came to me with a diagnosis of cerebral palsy accompanied by severe athetosis. Her prognosis is stable but she will never walk. She has used a manual wheelchair since age 5.
Upon consultation with Simone's physical therapist and as a result of my own examination, it is my professional opinion that Simone's manual wheelchair no longer meets her medical needs. Simone is routinely observed in physical therapy trying to use her wheelchair. On her own, she can move only 10 feet. It takes her 20 minutes to accomplish this simple task, making her exhausted. It takes her almost as long to recover from her efforts. Since the manual wheelchair was purchased to provide a primary means of ambulation, Simone's inability to use it for such purposes deems this wheelchair inappropriate and detrimental to her overall health, safety, and wellbeing.
Simone is in high school and is mentally mature. Presently, a teacher's aide assists her at school, but is not available to help Simone before and after school when she wants to move about to socialize with friends. At home, there are no immediate care givers because Simone's mother works and her father is deceased. A 9 year old brother helps when he can, but Simone is often stuck in front of the T.V. because she cannot travel independently.
I reviewed with both the vendor and her physical therapist other wheelchairs to determine if there is a less costly alternative to meet this child's needs. There are no medically appropriate less costly wheelchairs for Simone.
It is my professional opinion, based on Simone's diagnosis and
prognosis, my independent examination, consultation with her therapist, and the commonly
accepted medical practices for a person with Simone's diagnosis and prognosis that the
requested power wheelchair is medically necessary for Simone. It will correct the effects
of her cerebral palsy and athetosis on her ability to ambulate. Last, it will allow her
the necessary means of independence for a young woman her age.
Very truly yours,
R.U. Welle, M.D.
ACKNOWLEDGEMENT
The National AT Advocacy Project thanks Marge Gustas of New York's PAAT Project for her contribution to this month's newsletter.
CONCERNS FROM THE FIELD
Mark Douglas of North Dakota P&A recently contacted the National AT Project requesting copies of the 50 states' statutory definitions of AT. We could not help him. He is interested in other states' AT definitions for both education and Medicaid purposes. Mark would welcome any input. Please provide this information directly to Mark. He can be reached at 701-328-2950.
Mary Jo Butler from Idaho Co-Ad, Inc. is very interested in networking with advocates who are involved in Medicare AT issues. If this is an area of expertise or interest, please contact Mary Jo at 515-278-2502.
Administrative Hearings
Cynthia Berger of Disability Law Center in Alaska successfully represented a 29-year old woman at a hearing regarding Medicaid's denial of a power wheelchair. The appellant requested a new wheelchair of both her long term care facility and the Medicaid agency. Medicaid argued that this woman was not denied a service and was not entitled to a hearing as they had told her to follow specific procedures and had not actually denied her requests. The ALJ determined that Medicaid, through the care facility, did deny the appellant's request for a wheelchair.
The ALJ found that the appellant required a wheelchair which could convert to power upon release from the facility. Citing 42 C.F.R. §§ 483.15 and 483.70, the ALJ stated that the facility was responsible for providing its residents with reasonable accommodation of individual needs and functional furniture appropriate to each resident's needs. If the facility refuses to purchase the wheelchair, the hearing decision found it appropriate to be purchased by Medicaid.
To request a copy of this decision and supporting papers, refer to In Re Anonymous, NLS FH-0195 (Alaska 1996).
Marge Gustas of New York's PAAT program successfully represented a man seeking Medicaid funding for a specialized mattress. Michael B., age 49, suffers from progressive multiple sclerosis. He is quadriplegic and can move only his head. He must be turned at least every two hours around the clock, if not more often, to prevent skin breakdown. Michael's wife has been responsible for turning him, but due to the increased strain on her back, she cannot keep up this regimen. Michael's doctor requested Medicaid prior approval for a DFS mattress system -- a computer controlled, automatic weight shifting mattress, costing $4700. His request was denied.
Marge presented evidence at the hearing showing that this system was the least costly alternative available to meet Michael's medical needs. Based on this evidence, a hearing decision was issued directing prior approval of the mattress system.
To request a copy of this decision, refer to M.B., NLS FH-0196 (New York 1996).
AT ADVOCACY PROJECT GOES HIGH TECH
We have compiled a resource directory with primarily Medicaid and special education hearing decisions. We have also compiled a database of one-page abstracts of the decisions and other documents which are stored in a word-searchable format using a program called Folio Views. The database will be available in a Windows, word-searchable format (read only) and sent in disk form (with installation and operating instructions) to each state PAAT office. DOS versions will be available upon request.
The database will be expanded in the future to include decisions and other policy interpretations involving state vocational rehabilitation agencies, the Department of Veterans Affairs (VA), Medicare and any additional funding sources as they are submitted. A more detailed explanation of the resoure directory and the word-searchable database will appear in a future issue of AT Advocate.
We now have an Internet e-mail address and will soon have an Internet Home Page dedicated to AT issues. You may now contact us at our e-mail address, NLS01@sprynet.com. Our next newletter will provide you with our Home Page address or "URL" as it is called.
At this time, we would like to thank Alaska, California, Idaho, Maine, Massachusetts, Michigan, Minnesota, Mississippi, Montana, New York, Ohio, Oregon, Texas and Vermont for their submissions of hearing decisions and other materials for our resource directory.
PS: As many of you will note, we have submissions from only approximately 1/5 of the United States and the territories. We eagerly wait to include your significant (win or lose) hearing decisions in our database.
.
NEW LITIGATION
Rita Ward of Kentucky Protection & Advocacy Division filed a class action complaint in Federal District Court against Kentucky Department for Medicaid Services for their alleged failure to comply with Early and Periodic Screening, Diagnosis and Treatment (EPSDT) requirements. Specifically the suit alleges that Kentucky has not effectively informed or provided the entire range of EPSDT services to all present and future Kentucky Medicaid recipients who are under the age of 21 and are therefore eligible for EPSDT services. This class may be as numerous as 281,438 individuals.