As a part of Henry Schein’s mission to “Help Health Happen” for underserved populations, we’ve joined with The Viscardi Center, New York University College of Dentistry, and key partners to create Project Accessible Oral Health.
Project Accessible Oral Health’s mission is to address the need for increased oral health care for people with disabilities. We aim to raise awareness of the challenges the disabilities community faces in accessing health care services.
This blog series shares the powerful personal stories of people with disabilities, their families, and the professionals who serve and advocate for them.
Denise Vargas, Managing Consultant, Alumni Relations & Advocacy, The Viscardi Center
I feel blessed to be able to come back to the Henry Viscardi School at The Viscardi Center, my alma mater, and give back everything that they gave to me. This includes working as an advocate to help the disability community in all aspects, especially in raising awareness of the challenges we face in pursuit of accessible oral health care.
That’s why I want to share my story.
The importance of dental care and going to the dentist was in instilled in me from an early age. We had a lot of people in our family who lost their teeth as adults. Our grandparents and great-grandparents have had to wear dentures, and they would remind us that a dentist can fix something before it’s too late, or can help you avoid a problem that would make it difficult to eat or chew certain foods later on in life.
I also have learned that a lot of other medical issues can be seen through your oral habits. In some cases, a dentist might even see something and be able to tell you that you need to go see another medical doctor or specialist.
Despite knowing all of this, I have not been to a dentist in about 12 years.
Frankly, for me, going to the dentist means being really uncomfortable.
My first experience at the dentist was at the hospital. To be treated, I had to get out of my wheelchair and into the dental chair. I can’t transfer myself, so they had to pick me up and put me there.
Sitting in the dental chair was not comfortable. My wheelchair is custom-made for me, as most are for people with disabilities, since we all sit differently. So, not only was I really uncomfortable in the dental chair, I also couldn’t sit the way dentist needed me to for the exam. Because of my short stature, even a pediatric chair was still a bit too big for me.
Later in life, I tried again to go to the dentist and found one that was willing to see me in my chair.
They couldn’t transfer me to a regular dental chair, nor could I do so on my own, but I was so glad he was willing to treat me anyway. He was very understanding, attentive and patient. He even helped to recline my chair to put me in the position that he could work with.
But, while he was willing to do it in the chair, it was a very tight squeeze. He could only do it from one side of the chair, which made it difficult to really treat the other side of my mouth. Also, I can’t open my mouth very wide, so the little bit I can open makes it very painful when they try to place the plastic film for a dental X-ray in my mouth.
Although he did the best he could, I didn’t feel like I really got the proper cleaning or treatment.
I won’t go again to see a dentist unless I can find someone who is either willing to come to me in my home, or where I can be in an environment that’s easy and comfortable for me.
If it was more affordable and more accessible, I and many others in the disability community would definitely go to the dentist more often.
We often tend to take a lot of medication that builds up plaque and can cause other issues, so of course it would be great to be able to see the dentist on a regular basis to ensure all these things are taken care of.
I hope Project Accessible Oral Health can draw attention to what can be done to help make this a reality.
Keanu Resnick, Student, Henry Viscardi School at The Viscardi Center
I like to be active and stay healthy.
I play wheelchair basketball – it’s very easy for me. I like playing with my team because we’re all different.
To help build up my muscles, I’ll eat vegetables with my dinner and other foods to keep me strong. The doctor also tells me I need to take vitamins, make sure I drink milk to get enough calcium, get a flu shot, and other things like that to make sure I’m healthy.
Another part of being healthy is taking care of my teeth.
I brush my teeth twice a day, with a good toothpaste that I like. I drink a lot of water and get dental cleanings.
I also might get braces soon, but before I can, they have to remove some of my teeth in order to straighten them.
Cleaning my teeth is a regular part of my day and it makes a difference to my overall health, because I feel good. I get up, I brush my teeth, I get dressed, eat breakfast, wait for the bus to come, and then I get on and head to school.
The first time I went to the dentist, I was a little scared, but brave. I was very brave because I had already had a lot of surgeries and MRI visits for other medical conditions, so the dentist was not a big deal. I see the dentist about once a year now, about the same amount I see the doctor, unless I am sick. I am not scared of going to see the doctor either. I also see the eye doctor and retinal doctors once a year, but my hearing doctor every other year. At one time I had to see around 12 doctors, but this got less as I got older.
I think taking care of myself is serious.
I would like to see the dentists come up with a stronger toothpaste for kids, like me, who want to make caring for our teeth easier.
Dentists and doctors also need to talk to me about my health like an adult, not a kid. I am 17 years old.
And finally, their offices need to be more accessible with ramps.
One thing that makes me really angry is when I am traveling around New York City and see how inaccessible the subway is.
At the very least, I think we should be able to get in to see a doctor or dentist a lot more easily than the subway.
Elsie Low and Doug Resnick, Parents to Keanu, a Student at the Henry Viscardi School at The Viscardi Center
As a parent, one of your many priorities is keeping your child healthy. This is no different when your child has a disability, it is just more complicated.
Our son Keanu was born with a unique combination of medical issues. He has been through many surgeries and at one point had a team of up to 12 different specialists. So, from a young age, he developed a very thick book of medical history.
Today, 17 years later, his health is still always in the back of our minds. It doesn’t matter where we go, or how far, to get him the help he needs. It just matters that we do the work to find the right person for the right care at the right time.
Since Keanu has been medically poked and prodded all his life, going to the dentist was not a big deal.
He started when he was two years old for checkups, cleanings, and learning about the right way to take care of his teeth. We found a pediatric dentist who is also an EMT, so if something should happen, they have appropriate medical training.
Even with regular dental care, his dental health has always been a concern due to the skeletal nature of his disabilities.
The teeth tend to get crooked and compressed. That’s why his favorite food is pasta, as it is easy to eat, but there is some food that he tends to stay away from because it’s hard to chew. Also, Keanu came down with a Bell’s Palsy type of issue with his cheek. We’re not sure if this was brought on by itself or due to one of the teeth pressing on a nerve.
So, despite other health issues, it is time for us to bite the bullet and look into oral surgery.
We also know it’s time for him to get braces. He will be going out into the wider world soon and be among people who won’t know him and may judge him based solely on his appearance. And he has become more conscious of his teeth – he’s beginning to cover his mouth when he talks.
It would be great for him to have a set of straight teeth and the most beautiful smile.
Fortunately, we have dental coverage so we are able to do this for him. That’s not true for a lot of people.
Still, we can’t help but dread this next step and that feeling of “here we go again” as we start the process of doing research, finding the right options and worrying about him undergoing yet another surgery.
Ultimately, with that beautiful smile, we want people to perceive him as an intelligent young person that can contribute to this world.
Every milestone he hits is tremendous when we consider the challenges he has overcome.
One day we want Keanu to have a great job, a wife, children, and a home. We know in his own way, he will do that. He is the most compassionate, family-oriented, fearless, brave, and smart kid.
As parents, we want him to lead a long, healthy, happy life, with the best dental and medical care. It’s all any parent can hope for.
John D. Kemp, President and CEO, The Viscardi Center
The Viscardi Center feels strongly that access to good health care is a fundamental civil right of people with disabilities.
Yet, often we are overlooked or underserved, simply because people feel we can be dismissed or ignored. If we are sent away, then we as people with disabilities tend to become discouraged, stop fighting, give up and stay at home, or worse, not seek out the proper care. This only compounds our problems and ultimately costs the taxpayer more money, all while someone is suffering with an illness unnecessarily.
This is why we are proud to help raise awareness and ultimately change healthcare policies that will ensure people with disabilities can access good – even great – oral health care and lead full, healthy lives.
It’s a very challenging situation, especially when we think about creating a new service delivery system to provide oral health and overall health care to a community where no two individual’s disabilities are alike. Therefore, this important effort must focus on access, including access to the physical environment; access to affordable, proper medical and dental care; and access to appropriate healthcare education for the patient and the practitioner.
Access begins from the minute a person with a disability – anyone from a very young child all the way to a senior citizen – navigates getting from the parking lot to inside a doctor’s or dentist’s office.
- Is there a ramp? Can they enter the doorway?
- Is there appropriate directional signage?
- Can they access the chairs that are in there?
- Can wheelchair users transfer into the dental chair?
- How can a practitioner best serve a person on the autism spectrum?
- Is there an inclusive culture built within the office environment?
- Are they prepared and willing to accept people with a variety of disabilities?
- Are they willing to listen to what we are trying to say about how best to serve our specific needs?
Then, there are the financial pressures for both patient and practitioner.
The patient hopes whether they are employed or not, that some combination of private insurance or Medicaid will cover the visit while receiving valuable care from the health care professional. The doctor or dentist, on the other hand, may be facing limited reimbursement—at a certain rate based on an amount of patients being seen in 15 minute segments.
The intensity of services and the reimbursement rate just don’t provide for the adequate time that is sometimes needed to address the various, specialized needs presented by people with disabilities.
But we shouldn’t be exceptional.
We should be accepted as ordinary and there should be a way in which policy allows for people with disabilities, with a variety of conditions, to be able to be served properly.
Legislative and regulatory issues really need to be changed so that practitioners can be properly reimbursed for the services they are providing for children and adults with a broad range of disabilities.
Education is also important, especially for families and practitioners.
For families, it is to ensure they have the resources and are aware of all opportunities to help their children achieve optimal, preventive medical and oral health care. Conversely, we must as a community educate health care practitioners. For instance, helping to ensure there is a disability-themed keynote and/or sessions presented anytime there are dental and medical association meetings, so practitioners can better understand what they could and should be doing to serve our population.
Despite the complexities at hand, there is hope.
I believe we’re continuing to improve our ability to serve people with disabilities and to learn more about best practices. Today, health care systems such as New York University, Northwell Health and Stony Brook University are addressing this through clinics focused on serving the unique dental and medical needs of people with disabilities, and in an effort to improve their overall health. But, we must do more.
That is why The Viscardi Center embraces the launch of Project Accessible Oral Health.
It is within our mission to enhance the quality of life of all people, including people with disabilities. The nearly 200 medically fragile children who attend the Henry Viscardi School at The Viscardi Center every day need and deserve to have the best oral health and overall health possible.
We advocate at all levels to raise awareness and discover how accessible oral and medical health care can best be delivered to the 56 million Americans living with disabilities.
Mark Wolff, DDS, PhD
Professor and Chair, Department of Cariology and Comprehensive Care, Associate Dean for Pre-doctoral Clinical Education, and Associate Dean for Development and Alumni Relations at the New York University (NYU) College of Dentistry
New York University’s College of Dentistry is recognized as a leader in the field of dentistry. One of our most important roles as the largest dental school in the country is how we train the dentists of tomorrow, today. When we make decisions in the DDS curriculum, we can have quite an impact on dentistry nation-wide.
Within that context, we have become increasingly aware that we need to prepare our students to manage their future patients who will present with some sort of disability, including physical, cognitive, acquired, and developmental disabilities.
The disabilities community is massive in number with a complex range of issues that interfere with their ability to access and receive routine dental care. And a small number of these patients may need the special care provided in an OR equipped with general anesthesia. Given the size and diversity of the disabilities population, adequate treatment cannot be delivered by the currently very limited number of dentists who are trained to provide the required care.
That is why our students currently rotate in community programs that manage patients with disabilities of all forms and we have a special needs clinic that deals with patients who have disabilities.
Due to ever-increasing demand, we also recognize the need to expand our facility. Accordingly, we are in the process of constructing an 8,000 square foot facility designed to both educate students and deliver care to a very large population of patients in New York who have disabilities.
I’ve been treating patients who have significant disabilities since I started in practice in 1982 and I still do it on a daily basis.
Because of the training I received, which enables me to manage my patients’ complex medical, social, and physical issues, they are able to receive care in my office as easily as the general population. We need to find more practitioners who have that capability and make sure that they share their education and training with all of our students.
At the same time, we need to educate the parents, families, and caregivers of disabled individuals. We all know tooth decay is essentially a preventable disease, but how can we make this a reality for patients with disabilities?
When we see small children referred to an OR to receive general anesthesia, which is an expensive, potentially life-threatening procedure, even done in the safest hospital environment, and then they get another cavity, we’ve missed something important. We have to get our future dentists to understand how to educate the parent or caregiver, understand with sensitivity the problems that they face, and make sure our suggestions are realistic. If we don’t, all we’re doing is fixing holes in teeth on a temporary basis and nobody wins.
To help tackle this critical issue, New York University College of Dentistry is bringing its size, diversity, and expertise to Project Accessible Oral Health (PAOH).
Participating with all the other PAOH stakeholders will help us to better understand how disabilities affect an individual, their family’s quality of life, and the expense to us and our nation, as well as raise this issue in our legislatures, dental schools, and in current dental practices so that dentists are more comfortable dealing with and treating this population.
I have a dream of a future where every patient with a disability is able to access good dental care across the life span.
In this future, ensuring dental care for a disabled individual does not become a burden to family or caregivers, because it’s their local dentist, the same person who is filling mom’s teeth, who can take care of a disabled child, parent, or grandparent. This is the direction in which dentistry has to move. Our dentists – current and future – the public, and legislators have to start thinking about caring for people who need an out of the box solution.
It is a significant need in our society and it must be fulfilled. I hope that all Project Accessible Health participants come away from this event inspired to take this on as a project in their own community, and that this movement expands.
That would go a long way in making my dream a reality.
Steve Kess, Vice President of Global Professional Relations, Henry Schein, Inc. & cofounder of Henry Schein Cares
October is National Disability Awareness Month.
It is the first global public-private partnership to raise awareness of and address the significant need to increase oral health care for people with disabilities, thus improving their overall health and quality of life.
Henry Schein Cares is our company’s global corporate social responsibility program, and since its inception, its mission to “help health happen” has addressed the ongoing issue of access to care for underserved, at-risk, and remote populations.
However, over the years we have seen this population change from one based on socioeconomic need, to a dramatic increase in the number of individuals also facing the challenges of a disability.
It is as if almost everyone is just a few degrees of separation away from knowing, or becoming an individual with a disability, whether it be at birth, through aging, military service, or through unfortunate accident.
Henry Schein Cares’ and Henry Schein, Inc.’s leadership recognize that we can be champions of important causes like this, but we cannot do it alone. Each of us has our own expertise. Therefore, we sought out an exceptional partner in this effort. We found it in The Viscardi Center, led by President and CEO, John Kemp.
The Viscardi Center has been serving the disabilities community for more than 50 years and has established wonderful programs through its school, student life, community service, and the network of adults who use the Center as a resource to improve the quality of their lives.
John and his team saw the opportunity to make oral health in the disabilities community – normally an issue put to the side – a priority.
PAOH also benefits from the support of New York University’s (NYU) School of Dentistry, the largest dental school in the United States. Approximately 8 percent of all the dental professionals in this country will graduate from NYU, so to expose nearly 400 dental students to the importance of oral health care for individuals with a disability, as well as add their enormous resources in training the dentists of tomorrow to be aware of this cause, is a great step forward.
To have these two renowned institutions on board for this event, along with many other key supporters who are behind this issue, adds impact, credibility, and sustainability to our mission and for what takes place at our inaugural event in October and beyond.
With our partners and stakeholders, we’re building a network that will create a blueprint for success. We expect, over the next several years to quantify the number of individuals who receive care; to be able to capture anecdotal and statistical information about the importance of oral health for individuals with disability and case studies that can be shared and replicated; and to build the basis to start a movement of increased awareness of the importance of oral health as part of primary care for individuals with disabilities. And we are already planning our second annual event in 2018 at the Shalva National Institute for Individuals with Disability.
Every member of the disabilities community deserves to understand the importance of good oral health, the ability to access quality dental care, and to live with a healthy smile.
It is why we are so proud to be involved in Project Accessible Oral Health.
Judy Portelli, FNP-C, School Nurse Practitioner, Henry Viscardi School at the Viscardi Center
We have a wonderful community of students in our school with a wide variety of disabilities including cerebral palsy, spinal muscular atrophy, muscular dystrophy, osteogenesis imperfecta, and spina bifida, as well as disorders that are extremely rare.
Our students need specialized medical care on a daily basis.
This can include medication administration, pain management, respiratory treatments, urinary catheterizations, gastrostomy feedings and of course dealing with any emergencies, injuries or illnesses that may arise.
But make no mistake, they are regular kids.
That’s why our students love to come to school, because they can be like everybody else. They have recess, take gym, play basketball, go swimming, and participate in all kinds of activities in a community where they are accepted.
One of the most important things we do, from the moment they get here, is teach our children how to be independent, especially about their healthcare.
As needed, we teach them how to catheterize, do gastrostomy feeds, know their disabilities, and manage their own medications. These kids are amazing because they absolutely want to be independent with their own care. We had one child who we were teaching how to self-catheterize in stages. She mastered stages one and two. She was so motivated that, even before we could get to teach her stages three and four, she figured it out herself. Incredible!
Of course, it’s not an easy path for our students to achieve this independence, when they face all kinds of obstacles to access health care, in particular, dental care.
For example, some of our students are in large power wheelchairs and most offices are not able to accommodate them. There also can be a lack of practitioner experience, with a limited number of doctors and dentists who have been trained to work with people with our disabilities.
Despite how difficult this becomes for our students and families, I believe with more easily accessible healthcare, change is possible.
We had a student with chronic lung disease who could not get to her pulmonologist. When a pulmonologist opened in her community, that was both accessible for her chair and where they spoke her parents’ language, her frequency of having pneumonia dropped from three times a year to then only once in three years.
I also would like to see dental reimbursement made as easy as medical reimbursement. Dental care is just as important as medical care. If you go to the emergency room and you have a broken bone, no one is going to open up your chart and say, “Wow, this is your seventh broken bone of the year. I’m sorry, we can’t cover this, “which is what happens with dental care.
Everybody deserves good oral health.
In particular, our students with disabilities. Their good oral health ties into their overall health, which affects their quality of life and their future. We want our students’ future to be as successful as possible.