INTERNATIONAL VENTILATOR USERS NETWORK
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VOLUME 33, NUMBER 3
When I work with teenagers and young adults with ventilator-dependent disabilities, one of the most common concerns is finding work: will I be able to find work that respects my medical needs and that gives me enough money to live? Will I find a job that provides me with enough medical and health benefits?................MORE
The National Association for Medical Direction of Respiratory Care (NAMDRC) recently reported that The Centers for Medicare and Medicaid Services (CMS) intends to add non-invasive home ventilators to the Competitive Bidding Program for durable medical equipment (DME) set to begin January 1, 2021. This move could have profound implications for anyone using NIV in the home...........MORE
Recent Relevant Publications
Summaries, links to selected professional, disability, disease journals and newsletters
Vol. 33, No. 3, June 2019
Editor: Brian Tiburzi
Designer: Brian Tiburzi
Permission to reprint must be obtained from Post-Polio Health International (PHI) at email@example.com.
Ventilator users, health professionals, non-profits, company representatives – send comments and updates to firstname.lastname@example.org.
TIPS FOR FINDING A JOB WHILE USING A VENTILATOR
by Nico Meyering
When I work with teenagers and young adults with ventilator-dependent disabilities, one of the most common concerns is finding work: will I be able to find work that respects my medical needs and that gives me enough money to live? Will I find a job that provides me with enough medical and health benefits?
The concerns of working while disabled affect many: the Centers for Disease Control and Prevention (CDC) estimates that one in five Americans, or twenty percent of the US population, will incur a disability in their lifetimes. According to Global Genes, over 30 million Americans live with a rare disorder. This number includes myself and about 1,200 others living with congenital central hypoventilation syndrome (CCHS), which requires that I use a ventilator during sleep and illness.
Other statistics paint a bleak picture: in 1990, 28.4% of disabled people with a work-limiting condition actually worked. In 2013, only 14.4% did. In 1990, 27.5% of disabled people with a work-limiting condition lived in poverty. In 2013, that rose to 32.1%. According to a July 2018 report from the Brookings Institute, only four out of ten adults with disabilities aged 25-54 are working. Compare this to the 79% of all prime age adults, and you can clearly see the issue.
Why are these figures so bleak and what can we do to improve them?
I believe one factor is that people with disabilities don’t know about the full range of job-seeking, job-training and other related resources available to them. Increasing knowledge of and access to these resources can help more people with disabilities to enter the workforce and become independent. That’s why I compiled this guide to working while disabled, and I hope to update it regularly.
I hope that this guide alerts you to employment and vocational opportunities you hadn’t perhaps known of before, or that you can add your own suggestions and resources to it. Finding suitable employment is integral to meeting and exceeding the goals set by the Americans with Disabilities Act (ADA): economic independence, opportunity equality, and independent living. We can all contribute to making those goals a reality for all disabled people.
Nico was born in 1988 with congenital central hypoventilation syndrome. He serves on the board of the CCHS Family Network and lives in Philadelphia with his fiancee and their cats.
CMS TO ADD NON-INVASIVE VENTILATORS TO COMPETITIVE BIDDING PROGRAM FOR ROUND 2021
The National Association for Medical Direction of Respiratory Care (NAMDRC) recently reported that The Centers for Medicare and Medicaid Services (CMS) intends to add non-invasive home ventilators to the Competitive Bidding Program for durable medical equipment (DME) set to begin January 1, 2021. This move could have profound implications for anyone using NIV in the home, as it is likely to complicate patient access to appropriate therapy.
In 2003 Congress passed the Medicare Prescription Drug, Improvement, and Modernization Act (MMA). Embedded in the bill was a provision called Competitive Bidding for Durable Medical Equipment, Prosthetics, Orthotics & Supplies (DMEPOS), such as wheelchairs, hospital beds, oxygen, walkers, and CPAP and bilevel units. The provision required CMS to replace the current fee schedule payment methodology for selected DMEPOS items with a competitive bid process.
Under the program, a competition among suppliers of certain durable medical equipment in various competitive bidding areas around the country is held. These suppliers submit bids for products included in the program. Bids are evaluated based on the supplier’s eligibility, its financial stability and the bid price. Contracts are awarded to the Medicare suppliers who offer the best price and meet applicable quality and financial standards. Contract suppliers must agree to accept assignment on all claims for bid items and will be paid the bid price amount.
In 2006 Respiratory Assist Devices, or RADs (a category that includes bilevel devices according to an earlier CMS determination), were added to the list of equipment that would fall into the Competitive Bidding Program. NAMDRC believes this was done to circumvent the statutory requirements that certain ventilators are to be paid under a “frequent and substantial servicing” payment methodology. At the time, ventilators used to support respiration in the home were excluded from the competitive bidding process because CMS recognized that home ventilation was more complex than other items included in the program.
While Congress was cautiously optimistic after the small pilot programs, it halted the original Round One of the program in 2008, just two weeks after implementation, due to problems with the program design and execution. With a few cosmetic changes to the auction program, CMS began rolling it out to nine selected metropolitan areas in 2011 and added an additional 91 areas to the program in 2013.
Non-invasive ventilators have been on CMS’s radar for several years. In 2016, the Office of the Inspector General (OIG) reported that claims for non-invasive pressure support ventilators had risen from $3.8 million in 2009 to $340 million in 2015. While the OIG report suspected inappropriate billing or fraud behind the rapid increase, NAMDRC noted that clinical thought leaders claimed it was “much more likely due to the expanded diagnostic categories for which these devices had been found to be of benefit.” Nonetheless, the agency planned to include them in Round 1 2017 of the program, though it later abandoned this. Earlier this year, they announced they would be included in Round 2021.
WHAT'S AT STAKE?
If these plans proceed, industry and patient advocacy groups are worried that patients may face substantial challenges in obtaining non-invasive ventilators for home use. This in turn could worsen their health outcomes and threaten their independence. Many patients may be forced to seek care in a more restrictive setting or may require expensive hospitalizations and ER visits.
Competitive Bidding’s experience with oxygen provides a window into what we might expect with NIV. After liquid oxygen was subjected to the CBP in an earlier round, the number of suppliers fell sharply. Many patients who were dependent on oxygen had trouble obtaining the home oxygen supplies they required.
CMS claims that competitive bidding is necessary to control costs, but in the May issue of their publication, Washington Watchline, NAMDRC outlined why the prospective changes would likely undercut CMS’s cost-cutting goal:
Recent technological advances in mechanical ventilation allow more patients who would otherwise be institutionalized to remain at home and in their communities. Access to home ventilation therapy has allowed beneficiaries with respiratory failure to experience significant quality of life improvements. This shift to the home setting has corresponded to a significant reduction in Part A costs. When using the technology on appropriate patients with chronic respiratory failure, preventable acute care expense should decrease.
They also point out that lowering the reimbursement rate by itself has been proven to be ineffective in preventing fraudulent claims, another of CMS’s stated goals.
WHAT CAN YOU DO?
Efforts to appeal directly to CMS to make changes to the way they classify home ventilators have thus far been unsuccessful. NAMDRC is hoping to get legislation passed to address the problem. In the article referenced above, they write, “It is anticipated that there will be several large pieces of legislation introduced in the Fall and it is hoped that legislative relief from the CMS decision could be attached to one of these bills.”
Users of home mechanical ventilation can help by bringing this issue to the attention of their congressional representatives. The American Association for Homecare has a letter you can sign-on to and send to your senators by simply entering your zip code and filling in a few fields.
Alternatively, you can always call your senators’ or House representative’s offices and voice your concerns.
Last month, IVUN joined 18 other patient and pulmonary organizations in a letter sent to Alex Azar, Secretary of the Department of Health and Human Services, and Seema Verma, Administrator of the Centers for Medicare and Medicaid Services, detailing our objection to the decision to add non-invasive ventilators to the CBP. [Read the full letter.]
Fewer People Have Opened ABLE Accounts Than Expected
Far fewer people have opened ABLE accounts than are needed to ensure the viability of the program, according to an analysis from the National Association of State Treasurers, a group representing state officials who run ABLE programs.
Created under a 2014 federal law, ABLE accounts enable people with disabilities to save up to $100,000 without risking eligibility for Social Security and other government benefits. Medicaid can be retained no matter how much money is in the accounts.
As of the end of March, 40,000 ABLE accounts were open nationwide. The treasurers' group estimates that 450,000 ABLE accounts will need to be funded by June 2021 to reach self-sustainability, although states could raise fees or make other changes to compensate. The National Disability Institute estimates that 8 million people with disabilities across the country are eligible for ABLE accounts.
HUD: ABLE Accounts Shouldn’t Impede Access To Housing
The U.S. Department of Housing and Urban Development recently issued guidance to public housing officials across the country clarifying how they should treat funds accrued in ABLE accounts.
“Given that the ABLE Act creates a federally mandated exclusion for ABLE accounts applicable to HUD programs, in determining a family’s income, HUD will exclude amounts in the individual’s ABLE account,” the guidance states. “The entire value of the individual’s ABLE account will be excluded from the household’s assets. This means actual or imputed interest on the ABLE account balance will not be counted as income. Distributions from the ABLE account are also not considered income.”
ADAPT Stages Protest in Support of Disability Integration Act
Last month, ADAPT activists occupied the offices of 19 members of the House of Representatives. The group sought to drum up support for the Disability Integration Act, a bill that would ensure that people with disabilities who are eligible for institutional care would also have the right to access those same services in their own homes if they prefer.
As a result of the action, some lawmakers did indicate that they would sign on as co-sponsors of the legislation, ADAPT said.
Kohl’s Rolls Out Adaptive Clothing for Kids with Disabilities
Kohl’s has introduced adaptive apparel to its three largest kids’ brands, bringing sensory-friendly and adaptive clothing options to Jumping Beans, SO and Urban Pipeline.
Members of Kohl’s product development and technical design teams worked to understand the unique needs of each family and create beneficial products that could make life easier by offering both quality and functionality –– whether that meant accounting for a diaper in all size ranges, designing for comfort and functionality while seated in a wheelchair, creating strategically placed access to abdominal openings for medical ports and gastronomy feeding tubes, or focusing on easy dressing for both the user and caregiver.
Kohl’s joins a handful of retailers, including Target and Zappos, that have launched clothing lines aimed at kids with disabilities in recent years.
Looking for Equipment
IVUN has a member who is looking for a Fisher & Paykel HC500 Humidifier. They live in upstate New York and are willing to cover shipping costs. If anyone is willing to donate one of these machines, please contact IVUN at email@example.com, and we will make arrangements.
Opportunity to Participate in Research - Interview Requests
Stony Brook University
Pamela Block, PhD, Professor and Director, Disability Studies Concentration PhD Program in Health and Rehabilitation Sciences, Stony Brook University, is looking to interview family members of children who are aging, or adults who have aged, out of children's hospitals and health systems in New York State and beyond. If you would be interested in being interviewed please contact her at firstname.lastname@example.org or 631-444-3197.
Disabled Parenting Project
Have you ever wanted to compare notes with other parents with similar disabilities? Need support or encouragement in your parenting journey? Check out the Disabled Parenting Project's message boards.
Baxter SK, Johnson M, Clowes M, O'Brien D, Norman P, Stavroulakis T, Bianchi S, Elliott M, McDermott C, Hobson E.
Optimizing the noninvasive ventilation pathway for patients with amyotrophic lateral sclerosis/motor neuron disease: a systematic review
“Optimizing use of NIV in people with MND requires consideration of multiple factors as part of a process throughout the patient pathway. Current guidelines predominantly focus on the initiation of NIV and may underplay psychosocial factors. We have made evidence-based recommendations for each step in the pathway, which may help improve optimal uptake, usage, quality of life, and survival outcomes in patients with MND.”
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. 2019 Jun 16:1-12.
Does timing of initiation influence acceptance and adherence to NIV in patients with ALS?
Vitacca M, Banfi P, Montini A, Paneroni M.
“In ALS patients, initiation of very early NIV does not reduce its immediate acceptance or the short-term adherence. However, at least 1 in 10 patients may be at risk of reducing their adherence irrespective of early or late NIV prescription. As still under debate and not conclusive, further literature on early NIV benefit is welcomed.”
Pulmonology. 2019 Jun 4. pii: S2531-0437(19)30099-6. Full article.
Attributable Delay of Discharge for Children with Long-Term Mechanical Ventilation
Sobotka SA, Foster C, Lynch E, Hird-McCorry L, Goodman DM.
“Charts of children (0-18 years of age) with a new tracheostomy in the Pulmonary Habilitation Program at the Ann and Robert H. Lurie Children's Hospital of Chicago were retrospectively reviewed for demographic information, medical diagnoses, medical stability, discharge to home, reasons for discharge delay, and hours of staffed home nursing. All patients were discharged on mechanical ventilation. Of 72 patients, 54% had discharge delays, the majority were primarily due to lack of home nursing (62%), followed by delay of caregiver training (18%), caregiver health and social issues (8%), and delay in a transitional care facility bed (8%).”
The Journal of Pediatrics. 2019 May 29. pii: S0022-3476(19)30517-7.
A second conference will take place in 2019 at the Poughkeepsie Grand Hotel in Poughkeepsie, New York on Wednesday, October 2nd, 2019. This well-established conference will be celebrating its 40th anniversary and is one of the longest continuously running Respiratory Care & Sleep Medicine conferences in the country.
The European Respiratory Society will hold their 2019 International Congress in Madrid, Spain, September 28 - October 2, 2019. The programme for the meeting has been posted. Additional details and early registration are available on the Congress webpage.
October 19-23, 2019, New Orleans, Louisiana. The CHEST 2019 Annual Meeting will offer more than 400 general sessions, postgraduate courses, interdisciplinary sessions, original investigation presentations, CME/CE credits and MOC points for hundreds of sessions and more.
Registration is now open.
AARC Congress 2019 will be held November 9–12, 2019, in New Orleans, Louisiana. Highlights from the recent 2018 Congress can be found on their website.
ResMed Turns 30
ResMed marked its 30th anniversary last month. Over those 30 years, ResMed has experienced huge growth. From reported revenues of $1 million for its first fiscal year in 1990, ResMed has seen its revenue increase to $662.2 million for the third quarter alone for fiscal year 2019. To mark the occasion, ResMed posted a short video highlighting some of the changes the company has experienced over the last 30 years. The video is a nice reminder how far home respiratory care has come in the last three decades.