New Horizons Newsletter (Web Version) Winter 1995


New Horizons is a nonprofit newsletter published three times 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.

FROM THE PRESIDENT'S DESK

Last October more then 400 activists from ADAPT (Americans Disabled for Attendant Programs Today) gathered in Las Vegas, Nevada to protest meetings of the American Health Care Association which were held at the Las Vegas Convention Center. That association, which represents nursing homes, is the target of protests by ADAPT. ADAPT wants 25 percent of the federal funding that now goes into nursing homes for long-term care of the elderly and disabled to go toward services for personal care attendants that would allow people to live independently in their own homes. Next fall ADAPT will travel to Honolulu, Hawaii to again protest the dumping of millions of Americans into nursing homes. I strongly support ADAPT'S efforts for PCA programs to be implemented nation wide. Only in unity can disabled Americans achieve their constitutional right to live independently within the community.

MEDICAID WOES: It was announced late last summer that Nevada's Disabled Waiver Program was financially troubled. The program was implemented in February 1990 and offers disabled residents a chance to live at home and receive services by a homemaker, CNA, or skilled nurse. The program funds 75% of the cost it would normally pay for institutional care. The number of hours and type of caregiver provided depends on the level of care a person needs. The maximum number of hours for a severely disabled person who is ventilator dependent is 47 hours per week of skilled care provided by an RN or LPN only. Nevada does not allow a personal care aide to care for a vent user.

However, one of the health care issues which will be addressed in the 1995 Nevada legislature, will be to let disabled people on Medicaid hire their own personal attendants who aren't registered nurses. Many of us who are disabled depend on waiver services and other Medicaid programs to fund the cost of skilled and\or PCA programs. It is especially crucial for those of us who are vent users to remain at home and continue to receive a high level of care to meet our needs. Medicaid cut backs are a continuing threat to our independence and will force many of us into nursing homes where our level of care will be greatly reduced. Legally it is against the law for anyone to have to accept a lower level of care. We must know what our rights are and continue to fight for them. Nevada's Disabled Waiver Program as well as waiver programs throughout the country are in jeopardy because the federal guidelines for home health care were changed last summer and programs could be destroyed if these new guidelines are not adhered to. The exact details of the new federal guidelines are not being revealed to Medicaid recipients but the underlying problem seems to be that each Medicaid recipient must not exceed the 75 per cent cost of care limit. In the state of Nevada, some Medicaid recipients were exceeding that limitation without ramifications because prior guidelines stated that as long as costs were not exceeded as a total group, the program was not endangered. It is imperative that home care programs be maintained without imposing cuts in hours or restrictions on caregivers. I urge every disabled person to voice their opinion by writing to their congressmen, senators and representatives.

TID BITS...

Citizens Area Transit (CAT) now has para transit buses available that provide door to door transportation. The wheelchair lift equipped buses will pick you up in front of your residence and take you to your destination. For more information contact CAT in Las Vegas, Nevada at 301 Clark Avenue, telephone 455-7433 Dream Corporation located in Las Vegas, Nevada is an organization that repairs and restores old wheelchairs into working condition. The wheelchairs are then donated to disabled Nevadans who cannot afford to purchase a chair. Dream Corporation can be reached by calling 645-8551.

NEWSLETTER FOR SMA ADULTS

Adults with SMA now have an international publication to call their own. "Living SMArt" stands for Living with Spinal Muscular Atrophy - Reaching Tomorrow. It offers information, networking and support on an international level regarding topics such as living more comfortably with this progressive disease, exchanging opinions on controversial topics such as self-termination and suffering, networking on the internet, and health and medical information.

For a complimentary issue, write "Living SMArt," June Price, Editor, 3576 S. 43rd Street., #32, Milwaukee, Wisconsin 53220-1550

PUBLICATIONS

Tracheostomy Tube Adult Home Care Guide, is a 41-page booklet published by Shiley Tracheostomy Tubes to help home health care providers to teach home tracheostomy care is available free from Mallinckrodt Medical TPI, Inc., P.O. Box 19614, Irvine, CA. 92713-9614. 800/854-4071.

Learning Objectives for Positive Pressure Ventilation in the Home. The National Center for Home Mechanical Ventilation offers a 39-page listing of potential educational objectives to aid respiratory care professionals in customizing ventilator user and caregiver education. Available for $5 postpaid from the National Center for Home Mechanical Ventilation, 1400 Jackson Street., Room J105a, Denver, CO 80206.

A Guide to Wheelchair Selection: How to Use the ANSI/RESNA Wheelchair Standards to Buy a Wheelchair. Peter Axelson, Jean Minkel, Denise Chesney. Paralyzed Veterans of America. 202/872-1300. $9.50 plus $2.50 shipping and handling. 1994.

FOR COMPUTER BUFFS

The following are free 800 number bulletin boards.

DEN
(Disabilities Electronic Network)
171 Atlantic Street
Hackensack, New Jersey  07601
(201) 342-69840
Access number (800) 222-3273


DIALJAN
(Job Accommodation Network)
President's Committee on Employment of People with Disabilities
West Virginia Research & Training Cntr.
One Dunbar, WV  25064
(800) 624-8284
Access number (800) 342-5526

SUBSCRIBE NOW

We hope that you enjoyed reading this issue of New Horizons. If you wish further information contact us online through Prodigy to: nsnb39a@prodigy.com or via America Online to: paulamh@aol.com.

SUBSCRIPTION RATES:

Annual fees (mailed version) are: $5.00 for vent users and $15.00 for others. Donations are also welcome.

New Horizons Winter 1995

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Last Modified: Wednesday, 09-May-2012 18:52:26 PDT