Festering Cavities, Missing Teeth: Desperately Needed Dentistry For Disabled

(U.S. Department of Defense Current Photos/flickr)

(U.S. Department of Defense Current Photos/flickr)

Most people consider going to the dentist a minor inconvenience.

But for patients with an intellectual or physical disability, it can be a major ordeal.

Recently, there have been several reports on the significant obstacles people with all kinds of disabilities face in accessing the medical care they need.

People in wheelchairs, for instance, struggle with significant barriers trying to get appointments with medical specialists, according to a recent study by Dr. Tara Lagu, an internist at Baystate Medical Center in Springfield, Mass. And if you’re poor or mentally ill, dental care is even tougher to access, notes a 2011 report from the Institute of Medicine. Here, a dentist and Tufts University associate professor who treats people with disabilities offers his perspective on overcoming the towering barriers to oral health for the disabled.

By John Morgan, DDS
Guest Contributor

Dental care for people with disabilities can be particularly complex. It can also be life-changing.

Consider this:

An acquaintance of mine has a teenage daughter with a mild-to-moderate intellectual disability who attends a middle school in Boston. Because of badly aligned teeth and an open bite, she couldn’t close her mouth completely or use her tongue to speak effectively. On the recommendation of her daughter’s speech therapist and the encouragement of hygienists working with special needs children, the girl’s mother found a dental office that could manage her daughter’s dental care.

For three years, the daughter and her mom made three-hour trips by public transportation for monthly (sometimes more often) visits the dentist. But it was worth it. When the orthodontic treatment was completed, the girl’s speech was so improved that she was able to gain employment at a local fast food restaurant. She had gone from shy, awkward girl who hardly spoke to a girl who smiles and talks and enjoys being social.

On WBUR recently, Rachel Zimmerman’s piece, “Caring For Kevin: An Autistic Man, An Exceptional Doctor, A Life Renewed” – sheds needed light on the unique challenges of medical care for people with disabilities and their caregivers. Oral health is a fundamental part of overall health, and dental care for people with disabilities presents similar complexities. The challenges to providing dental care can be at least as complex, if not more so.

A recent study I conducted with my colleagues at Tufts University, published in The Journal of the American Dental Association documented the urgent need for dental care among people with intellectual and developmental disabilities. For instance, they are much more likely to have poor oral hygiene, periodontal disease, untreated tooth decay and missing teeth than the general population. Specifically, in our review of the electronic dental records of more than 4,700 people who received care, we found:

•10.9% of all patients did not have any teeth

•Over 80% of all patients had periodontitis

•32% of patients with teeth had untreated cavities

We found that nearly 25% of the patients had a limited ability to accept any dental intervention and required specialized resources, such as general anesthesia. Almost 40% of patients who were able to accept dental treatment required some form of behavioral assistance. Many dental offices are not equipped to provide care to patients with developmental or intellectual disabilities, in large part because of specialized training required to provide care for this population and because sedation and general anesthesia are not available to many dental providers.

Our study also found that, even with excellent care provided by dentists who are highly trained to treat people intellectual and developmental disabilities, there remains a high prevalence of disease, which signals the need for additional support and education among caregivers. The roles of the patient, caregiver and dental provider are all vital in developing preventive strategies to improve oral health.

Dr. John Morgan, DDS

Dr. John Morgan, DDS

My colleagues and I are now looking at ways to assist caregivers in promoting preventive oral health care at home, as well as how and when to access professional dental care. Our research team has just completed more than 800 surveys of paid and family caregivers and conducted focus groups of key stakeholders to determine the best ways to prevent oral disease and remove barriers to a healthy mouth for the I/DD adults.

Stay tuned. Particularly as our population ages and lives longer with more disabilities through advances in medicine or acquired though age and our caregiver resources dwindle, the findings of our research could shape how we manage oral diseases for people with disabilities and how we can maximize the roles of the dental professional, patient, and caregiver in promoting oral health for a vulnerable population.

John Morgan, DDS, is Associate Professor in the Department of Public Health and Community Service at Tufts University School of Dental Medicine. The Tufts Dental Facilities Serving People with Special Needs (TDF) is a network of Massachusetts dental clinics that provides oral health care to people with disabilities through a collaboration between Tufts University, the Massachusetts Department of Developmental Services and Department of Public Health.

(Posted by Rachel Zimmerman)

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  • Tammy Schweiger

    I am on disability since Jan. Of 2009…..when I was working,I had dental insurance,Noe due to what I have to pay for medicare,secondary insurance, and prescriptions….. I have gone to Catholic Charities in Pitts.,Pa.,I have had to have 2 teeth pulled,and I have a bridge and other dental work that they just don’t do……I have been in a lot of pain and need other services,it hurts to chew,sensitivities to hot and cold things….I just don’t know what to do and do not have money for the costs of such services….can anyone help???? Thank You in advance ,Tammy in Pa.724 651 0529

  • Rios

    My brother Luis has down syndrome, although he understands to a degree what’s going on, he does not communicate. He is also very strong and adamant when it comes to being examined by a doctor. As he got older he developed dental problems that progressively got worse, therefore so did his overall health. I went on a mission to try and find a medical facility that would be able to deal with disabled patients, such as his. By the grace of God I found this place, and in it I found true angels. Forever grateful for them. I pray this info. can assist your guys somehow. Keep Hope Alive! o/ Huggies ~ Lilly

    Tufts Dental Facility
    at the Massachusetts Hospital School
    3 Randolph St.
    Canton, MA 02021
    Phone: 781-562-0349

  • Tam Jones

    good article

  • Johnathan Stiner

    John Tod: Why should other people have to pay for your teeth? Why don’t you try paying for them?

    • oregonlogger

      You misunderstood John Tod…He’s not asking anybody to pay for his dental work. He’s stating a fact the vast majority of insurance companies hardly consider our teeth as a part of our body. I agree with him. I’d like to know why?

      • John Tod

        Thank you!
        I replied to him, you might want to have a look!

    • John Tod

      J. S.
      Teeth are part of our body, just like our tongue, nose, ears eyes, stomach, liver, intestines, etc.

      Do you agree with that?
      If so I will keep going, if not get an anatomy book and start reading from page 1 to the end. When you are done come back and finnish reading this!

      Insurance companies should help us with coverage of our teeth.

      I became disabled 5 years ago, from a brain injury, that, I didn’t ask for.
      For a year I couldn’t brush my teeth on my own. My wife had to do it for me.
      I still ended up with lots of dental problems, because of a pituitary gland that stopped working as a result of the injury.
      I had massive memory problems and muscle movement disorders, so flossing was very difficult. I spent 13,000 dollars on a credit card to stop all of the pain in my mouth. I was at the point were it hurt to eat or drink water. And brushing was painful.

      So now do you understand what I wrote and why?

      Then to top all of that off, I am fully disabled, and on disability, and Medicaid, so who should pay for my dental work?
      I will have you know that it was I that paid for it, well I am making the interest payment each month. My disability pay isn’t enough to live on.

      If my wife could work outside the home she would, but all of her pay would go to care givers for me.
      Do you have a suggestion?
      Were you just being rude?

      • John doe

        That’s ridiculous that medicaid doesn’t cover dental. You should move to a blue state. I live in Washington and there is a clinic in my town that charges a flat rate of 25 dollars for fillings and extractions for people on medicaid.

        Good luck with your condition. I have to say I was surprised to hear of it. Your posts are very thoughtful and well spoken.

        • John Tod

          Thank you very much for the very kind words.

          In Az. We have dental schools that charge almost as much as the dentist in private practice do?
          It is awful.

  • Dawn

    My son is 29 years old and lives with schizophrenia. He is 100 percent disabled. The only dental coverage he receives is extractions. Why is there no coverage for dental care? This year I’ll pay $6000 to save this teeth. Thank you for covering this issue.

    • John Tod

      I understand, I am 53 and have been disabled with a brain injury for the past 5 years.
      For a while my medicaid paid for extraction but now they wont even do that.

      I live in AZ a republican state, were there are no poor people or disabled people so there is no need to have dental coverage for the poor and disabled. (sarcasm)

  • cynrob

    One of the downsides of deinstitutionalization. Previously, the institutions had their own dental staff that was trained and comfortable working within these challenges. (Not to say that there weren’t different problems with that.) Now, caregivers have to find community dentists.

    • Mike

      This is a major issue. My wife is wheelchair bound with MS. It took me a lot of calls to find a dentist who would treat my wife. And then,
      I had to use a lift to get her into the dentist chair, hold her head to keep her steady, etc. I am extermely grateful to the dentist and his staff for working with us. Very few will.

  • Mary

    I work at an ICF facility that serves people with I/DD. Thank goodness for our wonderful, onsite, full-time dentist and hygienists, the three-sided toothbrushes, the suction toothbrushes, the psychologists, the occupational therapists, and most of the the direct support staff–all of whom are needed to provide oral hygiene. It’s a huge challenge, even with all of our supports.

  • Trena

    Medicare does not cover dental care. At a phase of life when dental care is at least as crucial as during younger years, the insurance industry typically looks the other way to protect it’s bottom line. Seniors need to be especially focused on good, preventative care including dental care, because without the ability to chew real, unprocessed, healthy foods, the whole body deteriorates quickly on a diet of processed, softer foods. Dental work from younger years needs to be maintained and updated.

    • Tam Jones

      ars, the insurance industry typically looks the other way to protect it’s bottom line. Seniors need to be especially focused on good, preventative care including dental care, because without th

    • freeandhappy

      Medicare doesn’t cover dental and half the people that do have dental insurance seem to max out of their benefits so quickly. Many fear going to the dentist or don’t take the time. I believe a healthy mouth is essential. Bad teeth, gum disease, exposed nerves, etc. can make life a living hell.
      Try http://www.apdentalplan.com/jash . Not only can you get great dental discounts (up to 80%) but cosmetic dentistry, orthodontics, & specialists. Don’t have to worry about maxing out, high costs, or limits!

  • John Tod

    After my brain injury, my wife and I were at a neurologist office, when he told us, that I have had a hypoxic brain injury. He said I was lucky, because lots of people that have injuries like mine can’t brush their own teeth. My wife and I look at each other and chuckled. He asked, what was funny, my wife answered him, “I brush John’s teeth, he can’t do it any more.

    When I was released from the hospital, they didn’t care if I could brush my teeth. They didn’t even tell us what had happened. I just remember, all of these new problems I was having. Kept asking my doctors about them and was just ignored, until we dropped every doctor from that city.

    In our new town we received all of our answers, this was a year later. I had problems with my teeth, and still do. The only dental care we can’t even afford is extractions.

    I still don’t understand why our teeth are not considered a part of our body
    That just is nonsense.

  • Banannamom

    Thank you for focusing on the problem of dental access for the disabled. Access to dental services for all the disabled has been further impeded by monumental cuts in MA Health under the Patrick Administration in MA. Persons with disabilities of all types, especially those with autoimmune diseases-which cause dry mouth with a host of ensuing dental issues-need these services desperately. Dentists who accept MA Health were always difficult to find b/c of low reimbursement from the Plan. Now that MA Health does not even cover the filling of a cavity, the “insurance” is practically useless. One cannot maintain good health without adequate dental care. Being disabled precludes the ability to work and pay for dental care out of pocket. Ignoring such basic needs of a vulnerable population is horrific. As a member of that population, I am all too familiar with this reality.

  • Sydney

    Having a child with autism who is, at age 12, rather strong and near adult size, I know dental care is impossible. We make just enough to not qualify for aid from the government and find the following challenges: Dental cleanings must be done under sedation. That means an operating room with all that goes along with it. It means getting a needle into my sons arm, almost impossible. It also means trying, and failing, to restrain him in the recovery room where he rips out his IV tub / needle and bleeds all over the place. Finally, it means finding the $2,800 out of
    pocket to pay for it all.

    We have only found one dentist in all of Mass who will do the work. Attempting
    alternatives is impossible because of red tape … such as an in office cleaning
    with the use of a sedative because that sedative is only oral, tastes terrible,
    is spit out by my son despite all efforts to mask the taste and, best of all,
    is not covered by insurance and costs $140 dollars.

    So, although our son’s teeth look very bad and truly need a cleaning for the tarter build-up, we only go the operating room route every three years as we put aside $1,000 a year.

    So much red tape, so little common sense, so useless government agencies and programs … yes, as you would expect here in Massachusetts

    • AdamsQJohn

      In Massachusetts, and elsewhere. Here in Oregon, a state recognized as a national leader in the historical support of DD populations, we have the same problems with accessing affordable dental care…and I might add that it’s not JUST lacking for DD populations, but also for the hard-working direct staff who support them in many non-profit organizations, and which offer little in the way of good dental insurance to their low-paid employees.