New Horizons is a nonprofit newsletter published twice a year by and for ventilator users, their families and those that care for them. Articles and comments are welcome. New Horizons is not and has never been associated with any other newsletter, product, or company.
In 1988 I moved from California to Nevada. Coming from a state that had a good support network and active participation by the disabled, I was dismayed to find that Nevada was far behind the times with little support. State funded programs for the severely disabled were non existent. We have made progress over the years but there is much work yet to be done. Nevada took a giant leap in 1991 when the sate implemented the Disabled Waiver Program. This home and community-based waiver program funded through Medicaid for people 18-65 years of age, keeps people at home by proving for skilled nursing services in the home. However, although there is a great need for such a program, the program falls short in providing the disabled an independent life style. The maximum number of hours a vent dependent quad can receive is 47 hours per week. The rest of the care is left up to families. Some vent dependent quads in Nevada are getting as little as 8 hours per week of home care. Assisted living for the disabled began in Nevada 3 years ago. Apartment complexes staffed with 24 hour attendants on call. Those of us who are vent users are shut out from this type of living situation because attendants can't perform medically skilled services such as suctioning, trach care, etc. In a similar vain, a new state program began last year that does allow skilled services to be performed by an attendant. The loop hole here is that the tasks must be considered as "simple to perform." Those of us who are vent users fall into this loop hole while the state deems us not eligible for the program.
I hope to have my own web site in the near future. New Horizons will be incorporated in that site. To my readers, I thank you for your support these past 6 years. A special thank you goes to Jim Lubin my web editor. To those of you who may not know who Jim is, Jim has his own web site called Jim Lubin's Home page. There is much information on disability resources and a wealth of other useful links, including a vent users mailing list to post questions and share ideas. Jim is a quadriplegic vent user due to tranverse myelitis which he contracted in May of 1989. Jim awoke one moring with a sore shoulder. He went went to work that day but soon lost consciousness. He heart had stopped beating and paramedics had to revive him several times. An MRI revealed acute transverse myelitis, an inflamation of the spinal cord, at C2 level. Jim was recently named New Mobility's, Person of the Year. He was also featured in Yahoo, I.VU.N News and NURSEweek. Web site: http://www.eskimo.com/~jlubin
A long delay by the state in filing necessary paperwork kept $500,000 in approved funds from being spent on the program in the current two-year budget cycle.
Now, lawmakers are being urged to authorize state spending of up to $2 million for the independent living program for handicapped Medicaid recipients in the coming budget period, starting July 1, 1999.
The hearing prompted little discussion of the 17 months it took the Department of Employment, training and rehabilitation and the state Human Resources Department to complete paperwork that would have triggered spending of the $500,000 - to the general fund.
Wayne Bottrell of Reno, Nevada who has multiple sclerosis, spent the night in his 600-pound chair so he could get to the hearing on time.
The state contends that money is the barrier to providing for more independent living programs yet the average cost of institutional care is $121,875 a year per person, with the cost split by the state and federal government. The cost of someone to live at home with personal assistance averages $56,272 a year. Nevada needs to wake up to reality and provide for all disabled Nevadans and stop wasting monies needlessly.
Why's that?
Institutional costs are eligible for Medicaid reimbursement to states. Home services aren't. I wrote awhile ago about activists pushing the Medicaid Community Attendant Services Act in Congress. That bill proposes that in-home services be covered by Medicaid - not just by a "waiver" program the state may, or may not, choose to offer. But this bill has gone nowhere.
Another villain, say activists, are the nurse practice acts in force today in most states. Toby Olson explains nurse practice act this way: "They carve out a range of activists and say, 'if a person is going to do this for pay, it's going to be a nurse.' Period." Olson heads Washington state's Governor's Committee on Disability Issues and Employment.
No matter how they doll it up with terms like "quality of care" and "professional standards," say disability activists, it's really about money. Having to have nurses handle these tasks makes them very expensive. A nurse being paid to "suction" a ventilator user is more costly than paying a personal attendant to do it. If the money comes from state Medicaid coffers, it becomes too expensive a proposition - -so expensive that a nursing home becomes a cheaper alternative for the state. This is the reason news reports often say home care is as costly as, or more costly than nursing home care: It's because the services are being provided by nurses - - likely required by state law to be provided by a nurse - - at their professional fee level. President Clinton's January 4 announcement of tax credits and other assistance for home care doesn't deal with this issue at all.
When states seek waivers to use Medicaid funds to pay home care costs, they must prove it's cost effective. Missouri activists have worked since summer with the state Medicaid office to develop a consumer-controlled "home- and community-based services Medicaid waiver", said Missouri disability activist Heather DeMian. The biggest roadblock to designing a cost-effective waiver, she says, has been the Missouri Nurse Practice Act. Under many nurse practices laws, "it's illegal to use your own judgment and rent a pair of hands," as Olson puts it. "If you can tell someone, 'pick up that blue pill - - not that light blue one, but the long blue capsule - - and put it in my mouth' - - if you're competent to do that, but you can't put the pill in your mouth by yourself, then you're not allowed to have just anyone working for you to do it, It has to be a nurse." says Olson. "Disabled people can't control their own care."
Disability activists in Kansas amended their nurse practice act in 1989 to allow delegation of what's termed "nursing-related tasks." Last year Kansas Medicaid saw a savings of $52 million as a result of using a home-and community based waiver to provide "consumer-controlled" attendant services to disabled people, including those who use ventilators - - that group of disabled people whose nursing care is always touted as so extremely costly.
A revamping by legislatures of the state nurse practice act can realize similar cost-savings and the dignity of controlling one's own care.
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Mr. President, Senator or Representative (use whatever may apply): I am writing to you in regards to some recent discoveries I made on a trip to Rutgers University in New Jersey. I am the victim of a spinal cord injury like 250,000 other Americans in this country. About 12,000 new injuries occur every year. In the past, the notion of ever curing spinal cord injuries or regenerating nerve tissue in the brain and spinal cord was thought to be an unattainable goal. Today, researchers are closer than ever to being able to do just that. Therapies are in place that will make this dream a reality. The only thing lacking to make people like Christopher Reeves and others like me stand up and walk again is the funding for this research. There have been several attempts to get legislation passed to acquire this funding but unfortunately it was tied to bills like health care reform and the tobacco bill which were shot down. Currently the estimated cost for care of SCI patients in the U.S. alone exceeds $8 billion dollars per year. The estimated costs of caring for someone with this injury average $1.5 million over a lifetime. The only people who like these figures are wheelchair manufacturers, healthcare providers, and medical supply houses. If funds were in place today to advance research, this disease would be conquered within the next 5-10 years. The cost of reaching this goal is far less than the future costs of caring for people with these injuries. What most people do not realize, is that these therapies for SCI injury will also benefit and cure other neurological disorders such as multiple sclerosis, head trauma, stroke, and peripheral nerve injury. Who in their lifetime will not be affected or have someone they know or a family member affected by one of these afflictions? I have seen these therapies with my own eyes. I know they work. We need someone to champion legislation that will provide the funds to cure these affictions. Who in their right mind would not spend $1 to save $20. Dr. Wise Young, Ph.D., is the Director of the Neuroscience Center at Rutgers University. He is one of the preeminent scientists in the fields of spinal cord injury, neurotrauma, SCI animal models, and the pharmacoligical therapy of SCI. His studies are funded by the National Institutes of Health, but the funds are extremely laking. Anyone who doubts my claims may contact him at Rutgers for further information. (732-445-6573). There are ways to achieve this funding through legislation that would impose no futher burden on the American taxpayer. If the government is so worried about rising health care costs and Social Security, then why don't they do something now to avoid expenses down the road? Some may claim that this research is a waste of money, that there will never be a cure. The same thing was said about cancer. Now there are therapies in the pipeline that will cure cancer. All we are waiting for is the completion trials and FDA approval. These efforts are moving forward at blinding speed. Why? Because they have the funding. 2.5 billion was spent on AIDS research last year. Now there is a vaccine in the works to prevent this disease . There are nearly twice as many people with spinal cord injuries as AIDS victims. So why were we given 20-40 million? The sqeaky wheel gets the grease. When it was thought that AIDS was only affecting homosexuals a lot of Americans were not that concerned, but when it started spreading over into the heterosexual community, everyone started screaming for a cure. Fear, not compassion was what motivated these funds. No one ever believes or wants to think they might be the victims of a disabling injury, but if you were, wouldn't you like tratments in place that could help? You can make a difference. We need your help. The person you may end up helping may be yourself, a friend, or a loved one. The answer could be a simple one. If legislation passed that required 50% of all fines collected for parking in handicapped parking places were designated for research to find a cure, I believe this would greatly advance the cause. . What better way for these funds to be spent? An enormus amount of hadicappped people return to work. I, for one, would rather work than sit at home and collect disability. I do not want handouts and most disabled people do not either. What hinders most disabled people from returning to the workplace is discrimination. Although we have the ADA of 1990 to protect our rights, much of the time it is of little help. If the government calculated the dollar figure that is saved on disability benefits and Medicare by people like myself who work and applied it toward the research, it would save billions in the future and allow others to return to the workplace. As Franklin Delano Roosevelt once said, "The test of our progress is not whether we add more to to the abundance of those who have much: it is whether we provide for those who have too little." I was recently in Washington and read this on a monument dedicated to him. In fact, I read many good quotes on various monuments that really made me wonder , are these truths we actually live by or just nice quotes to be etched in stone? If FDR were alive today, I am sure he would have rather seen the enormus amount of money spent on that monument put towards research than spent on him.
We can spend $200 million dollars to take pictures of rocks on Mars but only one tenth of that to better the lives of our own at home first? If we took a poll and asked the American Public what they would rather see, pictures of rocks on Mars or Christopher Reeves and hundreds of thousands like him stand up and walk again, what do you think the answer would be? I am not asking you to take my word on this. Please research my claims yourself. Contact Wise Young and his office. See what is going on and what can be done if the funds were set in place, I am also sending this letter to other legislators, government offices, and officials to plead for help with this matter. Please do not sit by idly and let the suffering continue any longer than it already has. The time for action is now. Let's do something to cure this affliction. Thank you for your consideration and I hope to hear from you soon.
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"We've spent days trying to figure that out," said Charlene Harrington, a University of California, San Francisco professor who's conducting a study on the matter for the federal Health Care Financing Administration.
Nevada ranks last among states in overall Medicaid money spent on alternatives to instutional care, she said. Nevada ranks 48th in providing home and community-based services.
Harrington spent three days in Nevada recently talking to officials, community leaders, seniors and advocates for the disabled. She questioned the reasoning behind the state's failure to provide alternatives to nursing home placements. Nevada is willing to spend $30,000 per year for a senior to remain in a nusing home but is unwilling to spend $3,800 per year to help a senior stay at home, she said.
In 1996-97, the state spent $9 million on home-and community-based services compared with $68 million for nursing home care.
Paul Gowins of the state's Community Based Services office praised Harrington's research. He's pushing the federal government to give Nevada seed money for startup costs associated with Medicaid-waiver programs. "Her reserch legitimizes the issues we've been brining (to state legislators)," Gowins said. "'(it) gives validity to what we've been saying all along."
Harrington will present recommendations to the Health Care Financing Administration in September 1999. The federal agency provides Medicaid-matching money to states for health care programs to assist the low-income and disabled.
Every month, the state serves nearly 100,000 Medicaid clients.
The Medicaid budget may be in the red by $30 million by the year 2001. If Medicaid rolls keep growing, officials had calculated that last year's drop in the Medicaid rolls would carry over into the next biennium. Instead, the Medicaid rolls are now expected to increase slightly.
State Budget Director Perry Comeaux said if the estimate holds up, the Guinn administration may have to ask lawmakers this session to take the money out of other programs to ensure Medicaid obligations are met.
Key sales and casino tax revenues are now coming in at higher-than-expected levels, and the gloomy forcast could be revised upward.
Gazette Inernational Networking Institute (GINI) coordinator of International Polio Network (IPN) and International Ventilator Users Network (IVUN), invites proposals for presentations during the Eighth International Post-Polio & Independent Living Conference June 8-10, 2000 Saint Louis. Marriott Pavillion Downtown. Deadline for proposals: July 1, 1999. (No fax or e-mail accepted)
Proposals are requested which:
Gazette International Networking Instutue
(GINI)
coordinator of International Polio Network and International Ventliator Users Network
4207 Lindell Boullevard #10
Saint Louis, MO (Missouri) 63108-2915 USA
314-534-0475 314-534-5070
gini_intl@msn.com
http://www.post-polio.org
Garret Frey, a 16 year old high school student, is a ventilator-dependent quad. His mother, Charlene is taking the school district to the U.S. Supreme Court to ask them to uphold a lower court's ruling and order the school district to pay for an attendant to provide her son's health care needs during the school day. Through most of his schooling, Garret has been assisted by a licensed practical nurse paid through an insurance policy and funds from the 1.3 million settlement with the motorcycle company involved in the disturbing accident. In 1993, a judge ordered the distrct to reimburse Mrs. Frey for nursing costs and provide for his future care. If the Supreme Court lets the lower court rulings stand, the school distrct could owe more than $285,000 in legal fees and nursing costs. A nurse could cost $30,000 to $40,000 a year.
FACT: Among adults with disabilities who work full-time, fewer than half (46%) say that their work requires them to use their full talents or abilities, compared to two out of three (66%) in 1994.
Copyright 1999 Paula M. Howaniec