President’s Message
The List
Steven Perlman, DDS, MScD, DHL (hon)
“The way to get started is to quit talking and begin doing.”
It seems like the two most common words heard by parents, caregivers, DSP’s, and patients with disabilities is “The List.”
No matter what their health problem is, no matter if they are in pain or not, no matter what specialist is needed, the answer is always the same.
“We are adding your name to the list.” It is expected, tolerated and no matter what inner outrage is experienced; it has now become the “Norm” when it comes to healthcare for children and adults with disabilities.
The health profession that is the poster for this crime is clearly the dental profession.
Organized dentistry loves to promote the quote from former Surgeon General Dr. C. Everett Koop “You’re not healthy without good oral health” and Surgeon General David Satcher who in his landmark May 2000 report Oral Health in America: A Report of the Surgeon General famously emphasized that “oral health is integral to general health” and that “You cannot be healthy without oral health”.
Yet, dentists including those in academia, health centers and private practices, don’t “blink an eye” telling families and caregivers there is an eight month, 2 years, or even 4 year wait for care.
I’ve heard every imaginable excuse; “Medicaid doesn’t pay enough,” “providers received little training,” “I can’t get operating room time” - It doesn’t matter.
The writing was on the wall in 2010 when the American Academy of Developmental Medicine and Dentistry (AADMD) realized that people with Intellectual/Developmental Disabilities (I/DD) were not designated a Medically Underserved Population (MUP) by the Federal Government, despite meeting all the criteria.
The AADMD reached out to both the American Medical Association (AMA) and the American Dental Association (ADA) to recommend the government grant people with Disabilities “MUP” Status, which features loan repayment, funding for research and faculty recruitment.
Immediately, the AMA signed on and gave us full support. The ADA did not respond until 2012, denying the request. Stating “it would not improve access to care for people with intellectual disabilities.” I have the denial letter framed at home and I immediately thought, “You can’t possibly be as dumb as you sound.”
In 2014 due to pressure from individual states led by Massachusetts the bureaucracy was overturned and the American Dental Association designated people with I/DD MUP Status.
My message this month was inspired by this email from a Board Member of the AADMD who is a leader in the Developmental Disability Nurses Association.
Doreen, I need some advice. I know you are busy but if you get a moment, can you read the below... it’s personal now with my dental advocacy.
“I’m sending this to you personally because nothing else has helped. My autistic son with severe dental issues that have now become dangerous and are affecting his well-being and health. He continues to get abscesses the size of golf balls inside his mouth and no dentist will see him.
Oh, we’ve tried. He is on long waiting lists. The calls never come. This past week was the largest abscess we have seen. No one would see him. We finally took him to Wynn Hospital ER in Utica who took X-rays that showed even more damage from the years on waiting lists. I believe they said that 28 of his 32 teeth were infected, broken or had root tips.
They gave me the X-Rays, and we were referred to NYHS Dental Health Center who told us we needed emergency treatment with hospitalization, and we would be placed on “the List.”
Here I am - the statewide Lead for the New York State Alliance for Developmental Disabilities and the NY State Chair for the National Council for Severe Autism, I serve on numerous Boards and Advisory Task Forces such as the New York State office for People with Developmental Disabilities and the N.Y. State Office of Mental Health, and my own son is in danger now because of dental problems.
He cannot be ignored anymore. I am afraid something is going to happen.
His health is in danger, and he gave up his self-esteem as an autistic adult while sitting on dental wait lists.
We are at your mercy; we need emergency surgery to get this done once and for all. He is now getting extensive migraines causing more health issues.
Doreen forwarded this dad’s letter to a few of us, and we expanded it to about a dozen colleagues we thought could help.
Through our network we were able to secure the patient care within a month.
Although our intervention will hopefully lead to a successful conclusion, instead of giving each other “high fives” because we had the clout and access to the right people and cell numbers; we need to be outraged by the ongoing and persistent neglect.
Over the past 32 years, Steven Gonyea, the parent of Dustin, whom the letter was about, and his wife have provided a home for 180 Foster children, and they have adopted 3 children that currently live with them.
Since our discussions began, I have received several e-mails from Steven which I would like to summarize:
My son isn’t part of the throw away society. He interns daily (in other words, works even through his disabilities) at local businesses through his Day Hab program. He has a quality of life. He has interests. He loves sports as you can tell here. Yet he doesn’t have a way to get DENTAL...
Unfortunately, there are thousands of “Dustin’s” out there. Most parents and families have given up. They sit on the sidelines waiting for someone to help while their child sits on wait lists. They feel hopeless and defeated because they don’t know what else to do. Most have already called their states, their provider agencies, their care coordination agencies (like here in NY), Even support groups. Then they call me. Because they know I’m action oriented and solution based and just do things differently. Parents are already exhausted with this IDD life we live. Some may have even taken the extra step and went to legislators for help. Most now go to social media and comment or post. Or join support groups or just talk with other parents. Waiting for someone to come save them. When I post a generic statement on social media about medical dental, I receive hundreds and hundreds of emails, calls, and responses. All with their own personal stories. So, then I add them to the hundreds of my own local stories about nonverbal autistic kids on waiting lists for a year for a cleaning, or other autistic and dual diagnosed kids on waiting lists for some kind of sedation because they can’t even get through an exam in the dental chair or a simple X-ray. A while ago, I said enough and started a DENTAL COLLECTIVE myself to give parents info, but I also partnered with “ ABILITYVILLAGE.COM” a new National resource directory that is going to provide dental information to parents within the I/DD world and also plans to do matchmaking and list professionals who specifically deal with the issues above and or other issues I keep hearing about. I’ve reached out to several national associations and groups including this wonderful group at AADMD trying to find solutions and answers instead of the proverbial “kicking the can down the road” or accepting “wait lists” approaches all because the system is complex and “hard.” Yes, it is. But our most vulnerable need us now more than ever and as someone who is living this with four individuals in my own home with disabilities but also medical and dental needs and someone who also is totally involved with boots on the ground advocacy and has a pulse on the parents and families’ needs everywhere, we have to do better. There are 100 reasons why this is so complex and hard. I don’t have to explain to anyone on here the reasons this is going on because I’m pretty sure we all know the reasons. But it’s time for everyone to have a seat at the table and to collectively start picking off each roadblock that has created this. I’m just a parent. I need all of you to say “enough” & let’s go fix some of this “ourselves.” And I truly believe the states and federal will see needles being moved the old fashioned way...by the people. By their community. By one doctor or dentist saying let’s help. Let’s partner and collectively fix some of this. There are answers. I will bring parents into this from everywhere to help. As just a parent, when I couldn’t get other services locally for my son and other I/DD individuals...I went out and built the solution. And do you know what happened? The county and the state and legislators then came to help. A build it and they will come “Field of Dreams” mentality. #SolutionsNotTalk.
Sadly, I hear Steve’s story way too often! Shame on all of us who shoulder shrug the plight of families when we add their loved ones to “the list”!
Shame on the American Academy of Pediatric Dentistry (AAPD) for digging in their heels on becoming an “age defined” specialty, forcing its members to abandon adults with disabilities. Some of their members, although fully trained, choose not to declare themselves pediatric dentists so they can continue to treat people with disabilities throughout their lifespan.
Fifty years ago, access to and the ability to receive competent oral health care was the number one health care problem people with disabilities faced.
It is worse now.
As a profession and a society, we must do better.
About the Author
Steven Perlman, DDS, MScD, DHL (hon)
President People Advocating for Optimal Health (PAOH)
Special Projects Sr., Editor Helen: The Journal of Human Exceptionality