IVUN

INTERNATIONAL VENTILATOR USERS NETWORK

 

an affiliate of Post-Polio Health International

CONNECTING

VENTILATOR USERS,

HEALTH PROFESSIONALS,

AND INDUSTRY

VENTILATOR-ASSISTED LIVING

This issue sponsored by:

VOLUME 30, NUMBER 3

JUNE 2016

Nicole Ficarra

My name is Nicole Ficarra and I am 25 years old. I live on Long Island in New York. I am a C3-C4 quadriplegic.
 
At the age of 4, I was in a motor vehicle accident. When I was first diagnosed, the doctors told my parents that I had a complete spinal cord injury and would have no movement from the neck down.
 
I was treated at Stony Brook Hospital (New York) for the first month. My rehabilitation, lasting another six months, was at Children's Specialized Hospital in Mountainside, New Jersey.........MORE

Joan L. Headley, International Ventilator Users Network

It is hard to be positive when…

 

...users of home noninvasive ventilation are an oddity to pulmonologists because they are using a ventilator without being trached AND they live at home.

…when their choice of a breathing device is determined by the make and models purchased by the area’s home healthcare company.

…when home healthcare company respiratory therapists assume that a ventilator user could not possibly be in control of his or her health care and related equipment...........MORE

Supported by:

Ventilator-Assisted Living

Vol. 30, No. 3, June 2016

Editor: Joan L. Headley

Designer: Brian Tiburzi

ISSN 1066-534X

© 2016 Post-Polio Health International.

Permission to reprint must be obtained from Post-Polio Health International (PHI) at info@post-polio.org.

Ventilator users, health professionals, non-profits, company representatives – send comments and updates to info@ventusers.org.

Making the Best Out of Life After a Spinal Cord Injury

 

Nicole Ficarra, Communications Coordinator, Avery Biomedical Devices, Inc., Commack, New York

My name is Nicole Ficarra and I am 25 years old. I live on Long Island in New York. I am a C3-C4 quadriplegic.

 

At the age of 4, I was in a motor vehicle accident. When I was first diagnosed, the doctors told my parents that I had a complete spinal cord injury and would have no movement from the neck down.

 

I was treated at Stony Brook Hospital (New York) for the first month. My rehabilitation, lasting another six months, was at Children's Specialized Hospital in Mountainside, New Jersey.    

Since then I have the use of my hands, can use the computer, write on my own, and drive my own power chair.

 

When I first had my accident, my body was very weak, and I could not breathe on my own. I was trached and put on the ventilator. I was vent dependent 24/7, and the only times I would come off would be for bathing and going in the pool. I was able to use my accessory muscles to breathe on my own.

 

It was 1994. The ventilator I used was the PLV-100 (LIFECARE). It was large, heavy and inconvenient for my family and me. When I was 4, I started using the PLV-100 only at night because when I slept my oxygen saturations would drop. 

During the day, though, I would feel very fatigued and would have a hard time paying attention in class because I would be concentrating so much on my breathing.

When I was 11 years old, I went to the hospital with pneumonia. The hospital doctor that was assigned to me during my stay asked my parents and me why it was that I was not using a phrenic pacer. 

When she asked us this question I had no idea what she was talking about. She told us more about the Avery Breathing Pacemaker. After going for several tests, it was decided that I was a candidate to receive this device because my phrenic nerve was attached.

I was very hesitant at first and was scared of how much pain I was going to be in. This would have been my fourth surgery since my accident. Just one year prior to having my pacer implanted, I had scoliosis surgery. When I first had my accident, I had a spinal fusion surgery. 

It took about six months to a year, but with both my parents and doctors kept telling me it would help me a lot, I decided to go forward with it.

I had the Avery Breathing Pacemaker implanted at Columbia Presbyterian in New York City. The procedure took about two hours, and I was in the hospital for only one day.

At first, I was on the pacer during the day and on the vent at night. It was a difficult experience because my body wasn’t used to the feeling of my diaphragm being stimulated and working. It took me a while to adapt to the feeling of the pacer.

After about six months, I started breathing on my own during the day and pacing during the night. It was definitely a hard transition because I would be very fatigued after breathing on my own all day but that’s when I started to get used to the pacer because I would look forward to being on it at night.

 

After a period of about one year, I got used to being on it and started pacing 24/7.

My health improved as well. When I was awake and sleeping, my saturations improved and I still maintain an average of about 98%.

 

My appetite improved. I started to eat more, and my diet became a lot more varied. I was even able to taste my food completely.

My infections decreased. I have not had pneumonia since the year before I got the pacer. Now the worst infection I get is a mild cold in the winter.

 

Due to the fact that I wasn’t concentrating on breathing, I was able to pay attention more in class, and my grades improved dramatically. I was also able to expand my daily activities, go on more vacations, further my education, and find employment.

Part II of Nicole’s story in the next issue of Ventilator-Assisted Living will discuss her education and employment experiences. 

 

Nicole Ficarra has her Bachelors degree in Advertising and has been employed by Avery Biomedical Devices since November 2015.

“Spinal cord injury (SCI) before the age of 15 years is a relatively rare occurrence, but it can have important psychological and physiological consequences. Although the exact frequency is unknown, it represents <4% of the overall incidence of SCI annually (National Spinal Cord Injury Statistical Center). The mechanism of injury, the male: female ratio, and the level of injury are different than in the adult population. The incidence increases rapidly with age, with >30% of injuries occurring between the ages of 17 and 23, and 53% occurring between the ages of 16 and 30. The rate of recovery following SCI in the pediatric population is also thought to be faster.”

Source: Spinal Cord Injury in the Pediatric Population: A Systematic Review of the Literature. J Neurotrauma. 2011 Aug:28(8):1515–1524.

Shriners Hospitals for Children in Philadelphia, Chicago and Sacramento specialize in treating SCI .

Changes in Coding and Coverage of Ventilators

 

Joan L. Headley, International Ventilator Users Network

It is hard to be positive when…

 

...users of home noninvasive ventilation are an oddity to pulmonologists because they are using a ventilator without being trached AND they live at home.

…when their choice of a breathing device is determined by the make and models purchased by the area’s home healthcare company.

…when home healthcare company respiratory therapists assume that a ventilator user could not possibly be in control of his or her health care and related equipment.

But, recent changes…

 

In the US, there have been changes that affect the process, which in turn affects users of home mechanical ventilation. 

HCPCS (hick picks) stands for Healthcare Common Procedure Coding System. The numbers are billing codes used by Medicare and monitored by CMS, the Centers for Medicare and Medicaid Services, to provide uniformity of service and payment to the providers. Ventilators are in the Level II HCPCS codes, which are designed to represent non-physician services like ambulance rides, wheelchairs,

walkers, other durable medical equipment.  Level II codes are alphanumeric and five characters long.

Changes to HCPCS for Ventilators Codes effective January 1, 2016 included adding these two:

  • E0465 Home ventilator, any type, used with invasive interface (e.g., tracheostomy tube) 

  • E0466 Home ventilator, any type, used with non-invasive interface (e.g,. mask, chest shell) 

 

The following codes were discontinued effective December 31, 2015: 
  

  • E0450 Volume control ventilator, without pressure support mode, may include pressure control mode, used with invasive interface (e.g., tracheostomy tube) 
     

  • E0460 Negative pressure ventilator, portable or stationary 
     

  • E0461 Volume control ventilator, without pressure support mode, may include pressure control mode, used with non-invasive interface (e.g., mask) 
     

  • E0463 Pressure support ventilator with volume control mode, may include pressure control mode, used with invasive interface (e.g., tracheostomy tube) 
     

  • E0464 Pressure support ventilator with volume control mode, may include pressure control mode, used with non-invasive interface (e.g., mask)

 

At the same time, reimbursement for the devices was revised, with the range for monthly payment being $1, 055.23 - $869.95.

In May of 2016, a revised document, Correct Coding and Coverage of Ventilators, was distributed to clarify coding and coverage requirements for ventilators in the Frequent and Substantial Servicing (FSS) payment category. The FSS category is for items for which there must be frequent and substantial servicing in order to avoid risk to the patient’s health, i.e., ventilators. The monthly rental payment for items in this pricing category is all-inclusive meaning there is no separate payment by Medicare for any options, accessories or supplies used with a ventilator. In addition, all necessary maintenance, servicing, repairs and replacement are also included in the monthly rental.

The document explains its need by stating: “Ventilator technology has evolved to the point where it is possible to have a single device capable of operating in numerous modes, from basic continuous positive pressure (CPAP and bi-level PAP) to traditional pressure and volume ventilator modes. This creates the possibility that one piece of equipment may be able to replace numerous and different pieces of equipment. Equipment with multifunction capability creates the possibility of errors in claims submitted for these items.”

It further reminds suppliers that FSS payment category prohibits FSS payment for devices used to deliver continuous and/or intermittent positive airway pressure, regardless of the illness treated by the device.

It stipulates that ventilators are covered for management of neuromuscular diseases, thoracic restrictive diseases, and chronic respiratory failure consequent to chronic obstructive pulmonary. The new guidance removes the prior “imminent death” requirement, which had stated that patients must need a ventilator 24/7 for FSS coverage.

This has not changed: Medicare will not pay separately for “backup” equipment.  But as before, “Medicare will make a separate payment for a second piece of equipment if it is required to serve a different medical purpose that is determined by the beneficiary’s medical needs.”

For example, if someone using a wheelchair requires a ventilator mounted on it for use during the day and then another ventilator of the same type for use while in bed, the vent user “may be prone to certain medical complications, may not be able to achieve certain appropriate medical outcomes, or may not be able to use the medical equipment effectively” without two vents. 

And, work in progress…

The development of bi-level devices, not used for “life support,” necessitated other HCPCS and requirements established by CMS.  The devices and codes in use today for CPAP (E0601) and bilevel PAP, with and without back up rate, (E0470, E0471), are labeled by CMS as Respiratory Assist Devices or RADs, a term not used in the medical literature or by the Food and Drug Administration (FDA). For over two decades, the term RADs has caused confusion for clinicians, providers and ventilator users.

The May 2016, Correct Coding and Coverage of Ventilators, acknowledged that some conditions (neuromuscular diseases, thoracic restrictive diseases, and chronic respiratory failure consequent to chronic obstructive pulmonary) are described in the Respiratory Assist Devices Local Coverage Determination and used to determine coverage for bi-level PAP devices. “Each of these disease categories are conditions where the specific presentation of the disease can vary from patient to patient. For conditions such as these, the specific treatment plan for any individual patient will vary as well. Choice of an appropriate treatment plan, including the determination to use a ventilator vs. a bi-level PAP device, is made based upon the specifics of each individual beneficiary’s medical condition.”

Stating that a person’s medical condition and its specifics should be considered is a start. The current Determination documents contain medically-outdated information, e.g., ignoring the advancements in noninvasive ventilation and its use and utilizing unnecessary/inappropriate tests. 

 

A group of experienced and articulate individuals representing the American Association of Respiratory Care, the American College of Chest Physicians and the National Association for Medical Direction of Respiratory Care have submitted a reconsideration of the current Medicare National Coverage Determination for home ventilators, including bi-level devices to CMS.

It is under consideration.

Acceptance and implementation of this well-conceived request would make it easier for those needing considerable hours of ventilation per day to obtain the equipment they need to use noninvasive ventilation and to live at home. The numbers are not large, and the cost isn’t either.

 

Individuals with neuromuscular conditions in need of breathing assistance would definitely benefit.

Networking

 

From CMMS Deshae Lott Ministries Inc 

Organized by ventilator user Deshae Lott, this non-profit offers scholarships to people with physical disabilities pursuing education beyond bachelor's degrees. Few existing scholarships offer financial support for people with disabilities in their pursuit for certification and degrees beyond the bachelor's level. Since students with disabilities face extra expenses related to personal care that other students do not, the scholarships can help severely disabled scholars defray such costs.


The deadline for Scholarship Applications is July 1, and the winners are announced around Labor Day.


It also offers Quality-of-Life Grants to help people with disabilities stay in or return to their homes, avoiding institutionalization. The amounts offered for

grants often will be smaller — $250 to $500 — unless funds can go directly to medical providers or to a special needs trusts existing on behalf of the applicant; such limits are otherwise necessary to avoid jeopardizing benefits and services, especially health insurance, that people currently receive or are on wait-lists to receive.
 

Applications for quality-of-life grants are accepted at any time. Quality-of-Life Grant awards are determined and announced by the end of each year.  

From the Christopher & Dana Reeve Foundation and the National Council on Disability 

Parenting with a Disability: Know Your Rights Toolkit
This booklet covers issues parents and prospective parents with disabilities face every day, including adoption and foster care, reproductive health, child welfare, family law, and what is required by law from government services. The toolkit includes excerpts from NCD's report Rocking the Cradle, developed with substantial contribution from the NIDILRR-funded National Center for Parents with Disabilities and their Families. It also features resources to obtain more information. The booklet is available at Parenting with a Disability: Know Your Rights Toolkit (PDF) and The Toolkit is also available in a plain language version (PDF). 

 

The Toolkit was introduced at the Forum on the Civil Rights of Parents with Disabilities.

Pelvic Health Matters: Webinar Series for Women with Mobility Impairments 

The information from this series of four webinars designed to help women with mobility impairments achieve and maintain their highest level of pelvic health has been archived.

 
Sessions included: 
•    Pelvic Health for Women with Mobility Impairments
•    Pelvic Health Transitions for Girls with Mobility Impairments
•    Bladder and Bowel Issues That Affect Sexuality
•    Access to Quality Pelvic Health Care for Women with Mobility Impairments


The information is on the website of Center for Research on Women with Disabilities (CROWD), Department of Physical Medicine and Rehabilitation, Baylor College of Medicine, Houston. 

Five Steps to Raising a Child with a Disability​ 

From the National Center on Health, Physical Activity and Disability

Update on ABLE Act by State​ 

The Stephen Beck, Jr. Achieving a Better Life Experience (ABLE) Act (PL 113-295) added Section 529A to the federal tax code to enable eligible individuals with disabilities to save money in a tax-exempt account that may be used for qualified disability expenses while still keeping their eligibility for federal public benefits. See details and restrictions.

ABLE State Legislation and Implementation Updates

ABLE websites created by states.

Recent Relevant Publications

 

From Canadian Journal of Respiratory Therapy 

“For RRTs to effectively implement the patient and family centered approach, there must be a shift in practice from the traditional hierarchical relationship toward a focus on creating an equal partnership among all health care providers involved with the patient and their family. We have started experiencing this shift….”

Patient and family centred care in respiratory therapy: A fundamental right?

Editorial by Bryan Buell, RRT, BGS and Christiane Menard. Canadian Journal of Respiratory Therapy. March-May 2016;52(2):50-50.

“Over the past 20 years, there has been an increase in the rate in which other respiratory interventions are being used in the home, including mechanical ventilation….”

 
Home care in respiratory therapy
Clarke BT. Canadian Journal of Respiratory Therapy. March-May 2016;52(2):51-52.

From Anesthesia & Analgesia 

“Anesthesiology owes something to the disease polio: our specialty was greatly changed by the 1952 polio epidemic in Copenhagen, Denmark. This epidemic resulted in the concepts of intensive care units (ICUs) and anesthesiologists’ presence in and leadership of ICUs and also accelerated work in blood gas measurements and better understanding of acid-base physiology.

 

Why a Paper on Anesthesia and Polio in 2016?

Calmes SH. Anesthesia & Analgesia. June 2016;122(6):1748-51.

“The percentage of patients experiencing specific pulmonary complications of interest was similar between groups (postoperative mechanical ventilation: 6% vs 8% for polio and control patients, respectively; prolonged mechanical ventilation: 0% vs 1%; reintubation: 8% vs 4%; pulmonary infection: 6% vs 6%; and aspiration: 0% vs 1%).”

 

Anesthesia and Poliomyelitis: A Matched Cohort Study

Van Alstine LW, Gunn PW, Schroeder DR, Hanson AC, Sorenson EJ, Martin DP. Anesthesia & Analgesia. June 2016;122(6):1894-1900.

From CHEST Journal 

“There is little guidance on what clinicians should do when advance directives (or living wills, specifically) are challenged, particularly when surrogate decision-makers’ interpretations of patients’ wishes conflict with the living will.”

 

Navigating Ethical Conflicts Between Advance Directives and Surrogate Decision-Makers’ Interpretations of Patient Wishes

Bruce CR, Bibler T, Childress AM, Stephens AL, Pena AM, Allen NG. CHEST Journal. Feb 2016;149(2):562-7.

From the Food and Drug Administration 

“Today we’re focusing on bleeding risk specifically with antacid-aspirin products used to treat upset stomach or heartburn. We’re not telling people to stop taking aspirin altogether.”

 

Warning: Aspirin-Containing Antacid Medicines Can Cause Bleeding

From The New York Times 

“Chronic critical illness is not something I learned about in medical school, or something that many doctors even talk about. One reason might be that the care for the chronically critically ill quite literally takes these patients out of our view – they move, as my patient did, from hospital to long-term care and back again, accompanied by a growing stack of medical records as things slowly fall apart.”

 

When the Patient Won’t Ever Get Better

From MedPage Today 

“In a study published last fall, researchers concluded that the effect of smoking on the lungs is underestimated by spirometry alone.”

 

When Is COPD Not Really COPD?

From the Star Tribune 

“Many agencies that employ home care workers say they are cutting hours and rescheduling employees to avoid paying overtime and travel costs, which are now mandated under a federal rule that took effect late last year.”

 

New Home Care Rule Intensifies Caregiver Shortage

Educational Opportunities

 

European Respiratory Society (ERS) International Congress 2016 
September 3-7, 2016, London, United Kingdom.
More.

AARC Congress 2016 

October 15-18, 2016, American Association for Respiratory Care Congress 2016: 62nd International Respiratory Convention & Exhibition, San Antonio, Texas. Details and registration.

CHEST 2016 

October 22-26, Los Angeles, California. More.

FOCUS Fall 2016 

October 27, 2016 Thursday), Poughkeepsie Grand Hotel & Conference Center, Poughkeepsie, New York. Details and registration.

Canadian Respiratory Conference 2017 

April 20 - 22, 2017 - Montréal, Québec. More information here.

CCHS Family Conference 2018, alongside The 5th International CCHS Conference 

June 19-23, 2018 at The Chase Park Plaza, St. Louis, Missouri, USA.

JIVD/ERCA Conference in 2018 

First announcement: JIVD (Journées Internationales de Ventilation á Domicile) and ERCA (European Respiratory Care Association) are working on the organization of their third joint meeting that will take place in Lyon, France, March 15 - 17, 2018.

 

Industry

New Adapters Available from Passy Muir 

Passy-Muir, the leading manufacturer of the No Leak speaking valve has introduced two adapters to provide a way to easily connect the Passy-Muir® Valve inline while the patient is mechanically ventilated. The adapters are designed to provide a secure connection between the Passy-Muir Valve and a tracheostomy tube, ventilator tubing, closed suction systems, or other adapters. Each adapter is latex free, color coded for easy identification, and provided in re-sealable, multiple unit packaging.

The PMV-AD1522™ is a step-down adapter designed to connect the PMV® 007 (Aqua Color™) to a T-piece type closed suction system.

The flexible, PMV-AD22™ adapter is designed to be used with the PMV® 2001 (Purple Color™). All Passy-Muir products are proudly made in the USA. Both adapters now available for purchase through Passy-Muir.

For more information or to order: 800-634-5397 or www.passy-muir.com/adapters.

From Philips Respironics 

Designed specifically for children, the Wisp Pediatric Nasal Mask features a child-friendly giraffe fabric pattern, a modified cushion curvature and support tools to help provide a positive experience for young patients and their families.

Leak Correction Dial – The innovative Leak Correction Dial on the mask enables caregivers to fix small leaks without disturbing a child's sleep.

An Infant-Centric Design – Children tend to have low or no nose bridges as opposed to adults. With this in mind, the Wisp Pediatric Nasal Mask has three cushion sizes designed to fit infants weighing 22 pounds to age 7, with a shape created specifically to fit the curvature of an infant's face and nose.

As the latest addition to the Wisp family of masks, the Wisp Pediatric Nasal

Mask may help to smooth transition across care settings—from the hospital to the home and as the child ages, providing continuity of care with the full line of masks.

The Wisp Pediatric Nasal Mask will be available in the U.S. and Europe in the second half of 2016.

Just a Reminder for 2016 

CareFusion announced in August 2011 that they would no longer manufacturer the LTV 800®, LTV 900® and the LTV 950®. The end of support for the 800 and 900 is 10/31/2016 and the suggested replacement is the LTV 1100. The 950 date is 12/31/2016. The suggested replacement vent is the LTV 1150.

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