Ensuring People with Disabilities Can Access Prescription Drugs During the Current Crisis
Many people with disabilities are at increased risk of serious or fatal complications from COVID-19 (coronavirus). In an active community outbreak, the safest option may be to self-isolate at home, perhaps for weeks or longer. In order to prepare for this possibility, the CDC is currently recommending that people at high risk stock up on necessities, including maintenance prescription medication.
Unfortunately, many people with disabilities can’t take this advice because of insurance restrictions. Insurers typically refuse to cover refills on 30-day prescriptions until only three to seven days of medication remain. For certain controlled substance prescriptions, patients may be legally unable to fill a new prescription until the date that the previous prescription is scheduled to run out.
These coverage restrictions could leave many disabled people in danger. Visiting the pharmacy can be risky for some people with chronic illnesses in even a normal flu season. Some people with disabilities may also face logistical challenges in getting to the pharmacy if in-home support services become disrupted due to a local COVID-19 outbreak. While many people can use mail order pharmacies to avoid this risk, localized outbreaks and social distancing measures may disrupt supply chains. We cannot stake our lives on the assumption that the availability of medications will remain stable in the coming weeks and months. We need to be able to stock up now, as the CDC recommends.
Disrupting treatment always endangers patients, but even more so in a pandemic. COVID-19 is expected to heavily tax the resources of the health care system. The need for inpatient treatment will likely exceed capacity in many communities. Even outpatient clinics are likely to have a high number of patients seeking treatment for COVID-19 symptoms, making avoidable visits risky for those more vulnerable to complications. Additionally, patients whose chronic conditions are destabilized are in danger of becoming more severely ill if they are infected with COVID-19.
Fortunately, a few insurance companies have taken measures to protect patients. In both Massachusetts and North Carolina, Blue Cross Blue Shield has waived early refill limits on 30-day maintenance prescriptions. Recognizing that most of us cannot simply wait for our insurers to behave responsibly, the Washington state insurance commissioner issued an emergency order requiring insurers operating in the state to cover early refills. On March 10th, the Center for Medicare and Medicaid Services issued guidance to Medicare Part D plans reminding them of their ability to relax restrictions on early refills and lift barriers to obtaining prescriptions from out-of-network pharmacies.
While these emergency policies still fail to provide sufficient protection for many people with disabilities taking prescribed controlled substances, they offer significantly more protection than the status quo.
To further safeguard access to treatment, there are some additional changes beyond allowing for early refills to standard insurance policy practices that would be beneficial. These include relaxing restrictions on prescription fills at out-of-network pharmacies and offering coverage of non-formulary drugs if supply chain issues leave patients with no available formulary options. Widespread adoption of such policies would go a long way toward protecting the lives of people with disabilities in the COVID-19 crisis.
Spinal Network offers Disability Etiquette training to companies and organizations. The fee for this training is based on the location of the training and the number of attendees. Each training session is approximately 1.5 – 2 hours in length. Our training sessions are interactive allowing for questions and dialogue for better understanding of the content.
Our Disability Etiquette training will discuss the following:
- the various types of disabilities
- equipment sometimes used
- raise awareness
- dispel myths.
We are often asked why a company or organization should practice disability etiquette. When disability etiquette is used, everyone feels more comfortable and interacts more effectively. This creates a more productive work environment.
If your interested in Disability Etiquette training click the button below to send an email.
Nick LiBassi grew up in Maywood, NJ and has lived in Rochelle Park since 2009. Nick became a Zoning Board member in 2013 and served in that capacity until the end of 2018.
Nick sustained a spinal cord injury in 1996. Since that time Nick has worked in the disability community in various capacities. His experience working with consumers on the vendor side as well as his first-hand knowledge regarding advocacy has allowed him to fully comprehend the unique challenges that people with SCI/D (spinal cord injury/disease) face in all aspects of life.
Nick has over 18 years of broad-based professional business experience. Working with Johnson & Johnson for 8 years, Nick was in charge of a specialty national sales team that was tasked with launching new products. In his time with J&J Nick had varying responsibilities that required strong leadership qualities, relationship building skills, and a thorough understanding of the overall business environment.
After his time with Johnson & Johnson Nick helped lead a team within an international executive search firm. He successfully placed numerous professionals at the VP and “C” levels within large organizations such as BASF, DAVOS and Roche.
Nick is currently Vice President of Partnership Expansion for United Spinal Association. He is responsible for several programs and projects that assist the organization in fulfilling its mission. He is experienced in creating programs, developing clear action plans and implementing successful strategies to address needs. Nick works with members throughout the country to ensure they have the resources needed in order to be as independent and successful as possible.
Nick holds a degree in Business Administration, has served on the National Board of Directors for United Spinal Association, and currently serves as a Committee Member on the Disability Advisory Board with Alaska Airlines and as a Community Advisory Board Member for Kessler Institute for Rehabilitation. Recently Nick was appointed by Secretary of Transportation, Elaine Chao to the Air Carrier Access Act Disability Advisory Board.
Nick was sworn in a Rochelle Park Township Committeeman in January of 2019 and was sworn in as Mayor in 2020. Nick is also the Rochelle Park, NJ Fire Commissioner.
When you get hurt and suffer a Spinal Cord Injury, you suddenly find yourself in a new world where it feels like you have no control over anything. You’ve joined a “club” you may have known about, but never expected to be a member of. All manner of thoughts and feelings may be taking turns occupying your brain. Some form of depression is a very normal reaction at some point in the adjustment process. Some people, amazingly, avoid it completely. “It is what it is, I have no choice but to move on, no point in allowing myself to dwell on it, get depressed, etc.” Not many escape some level of sadness, however, but acknowledging it is difficult. Your body has just changed in ways you never dreamed of, so the last thing you want to think is that your mind is messed up too. If depression sets in, don’t ignore it, don’t withdraw, do something to change it.
Typical symptoms of depression include feeling sad, low energy, trouble sleeping, weight loss or gain, suicidal thoughts, loss of interest, moodiness, and loss of concentration. People are amazingly resilient and usually the depression lifts. There are ways to accelerate the process of adjustment:
- Put one foot (wheel!) in front of the other and force yourself to do the things that you know usually are enjoyable.
- Talk with someone outside your usual circle (we often don’t want to burden family or close friends) with whom you can safely say, “This is really hard!”
- Get with other folks with SCI in a support group or socially.
- Get out of the house and socialize, exercise, get into disabled sports, make plans to get back in school or take some classes in something you were always interested in but never got around to.
- Start thinking about what employment would look like.
If you’ve had depression in the past, you may have a blueprint for how you dealt with it, although now it is likely a much more difficult and challenging circumstance than any you have encountered.
If the symptoms continue to be severe – if nothing makes sense, nothing seems worth it, you are not doing the things you can do to move on (mastering self-care, advocating for yourself, getting out in the community, enjoying friends or family) it may be time to talk to someone – a counselor or therapist, clergy, or maybe a peer support person you met in Rehab. If you are having suicidal thoughts it’s definitely time. (Crisis Line 888-724-7240). As much as we feel pressured to be stoic and stay strong, we all have a limit on how much we should go it alone.
Richard Green, LCSW Sharp Rehabilitation Hospital, San Diego
December 20, 2019
CRT Stakeholders and Friends,
We have something extra to be grateful for this Holiday season! Tonight the President signed into law H.R. 1865 that includes permanent protections for Complex Rehab Manual Wheelchairs and their accessories/components. This is a great win in our collective advocacy to protect access to Complex Rehab Technology (CRT).
The included CRT provisions will permanently exempt Complex Rehab Manual Wheelchair bases from the Medicare Competitive Bidding Program (CBP). Additionally, there is an 18-month suspension in the current application of CBP payment rates to Complex Rehab Manual Wheelchair accessories. The suspension is effective January 1, 2020 to June 30, 2021 which will allow for further discussions to achieve a permanent resolution.
Our sincere thanks to our CRT champions Representatives John Larson (D-CT) and Lee Zeldin (R-NY) and Senators Bob Casey (D-PA) and Rob Portman (R-OH) for their leadership and hard work. We’re also grateful to Energy & Commerce Committee Chair Frank Pallone (D-NJ) and Ranking Member Greg Walden (R-OR), Ways & Means Committee Chair Richie Neal (D-MA) and Ranking Member Kevin Brady (R-TX), and Senate Finance Committee Chair Chuck Grassley (R-IA) and Ranking Member Ron Wyden (D-OR).
This shows when the CRT Community comes together things can get done! Recognition and thanks to the ITEM Coalition, United Spinal Association, NCIL, National Multiple Sclerosis Society, Christopher and Dana Reeve Foundation, Paralyzed Veterans of America, Spina Bifida Association, Clinician Task Force, RESNA, Abilities Expo, APTA, AOTA, and all the other consumer, disability, and medical professional organizations who invested their time in educating and advocating. Thanks also to our NCART members, dedicated consumer advocates, and to our industry partners AA Homecare, NRRTS, US Rehab, and the state associations for their significant contributions.
In summary, thanks to everyone who has played a part. It wasn’t quick and it wasn’t easy, but everyone’s outreach and persistence paid off. We hope you are able to enjoy the Holiday break and look forward to building on this win as we continue the work to protect access for people with disabilities who depend on CRT.
Our Peer Mentor program is off to a great start with thirteen trained and certified peer mentors. Lindsey Elliott, peer mentor trainer with the United Spinal Association, came out to San Diego to facilitate the full day training. The feedback we received was 100% positive and it was great to see so many people completely engaged.
I want to thank the Student Ability Success Center at San Diego State University for hosting our event. They were so accommodating throughout the planning process and the day of. Thanks also to Which Wich for the great sandwiches and box lunch.
We are making plans for a great Peer Mentor section on our website, one where you will be able to meet our peer mentors and watch an introductory video from each. If you are have need for peer mentor services, please click the button below..
Every day, members of the United Spinal community face unequal access or exclusion due to physical barriers and ineffective policies, practices, or procedures. When frustrations arise in healthcare, mobility, education, work or limitations in quality of life, through grassroots advocacy, your personal experience becomes the seed that can bring about necessary change.
What Is Grassroots Advocacy?
Grassroots advocacy is an awareness initiative generated by concerned individuals that builds a community of support both on the ground and online. People seeking a solution use their own voices to contact organizations or local, state, and/or federal legislators regarding an issue that affects them directly. As a grassroots advocate, each of us has an opportunity to ‘plant seeds’ of concern and cultivate the kind of attention and action that solves problems. By sharing a personal story of need, your own experience and effort are what nurtures a movement to grow, like grass, and affect change across the country.
Anyone Can Be a Grassroots Advocate
Grassroots advocates are members and allies of a directly affected community, like you and me. This means, anyone who is personally affected by an issue has the power to act as a grassroots advocate. Many believe this is strictly the job of direct lobbyists, or those who politically advise on behalf of organizations and maintain professional lobbyist credentials, but it is not. There are also patient advocates, who support individuals on a case-by-case level in a medical setting. Grassroots advocates, instead, voluntarily speak on behalf of themselves and others for local, state or national policy change.
Planting Your Own Grassroots
When it comes to grassroots advocacy and addressing the barriers we face living with physical disabilities, we have to ask ourselves an important question: do I accept this or is there something I can do to make this situation better for myself and for others? If the answer is yes, it’s time to start planting your own seeds of change.
If you are interested in getting more involved with grassroots advocacy, speak with your United Spinal chapter’s advocacy representative and consider joining our Grassroots Advocacy Network: https://www.unitedspinal.org/grassroots-advocates-rolling-together/
— Brook McCall, MPH, United Spinal’s Grassroots Advocacy Manager
This year’s NDEAM theme is The Right Talent, Right Now, which underscores the essential role that workers with disabilities play in America’s economic success, especially in an era when historically low unemployment and global competition are creating a high demand for skilled talent.
“Every day, individuals with disabilities add significant value and talent to our workforce and economy,” said U.S. Secretary of Labor Alexander Acosta. “Individuals with disabilities offer employers diverse perspectives on how to tackle challenges and achieve success. Individuals with disabilities have the right talent, right now.”
I feel that one of the most intimidating factors for a potential employer and one of the most confusing aspects of the job interview for both parties is reasonable accommodation. The employer might be thinking, “what is this going to cost, will it create a financial hardship?” The interviewee may not know how to broach the subject or when during the interview process this should take place. My own personal thoughts regarding this and again this is just my thoughts, you should have put a good amount f time thinking about this, what do you really need in a workplace to do the job. This is not always just about the physical layout, you have to think about things like start time, restroom breaks and the fact that it will probably take longer than your able bodied counterpart.
If you go to this page you will find a few valuable resources to get you started on your journey and remember we are just a call/email away should you need help or support. https://spinal-network.org/employment-preparedness/