Joan Rush is on a humanitarian mission. She is calling on the BC government to fulfill what she views as its legal and moral duty to provide timely and adequate dental care to adults with developmental disabilities. She describes the current lack of access to care as a crisis and in 2013 published a report containing her recommendations for addressing the shortfall.
As someone who has spent the past 10 years trying to secure much‑needed dental care for her 28-year-old son, Graeme, who was diagnosed with severe autism at the age of three, Rush has had first-hand experience navigating the complex, multiple-agency care system. She also holds a master’s in health law from UBC.
Graeme does not speak, read or write. Throughout his childhood, he received the specialized health and dental care his condition requires at BC Children’s Hospital. Rush says her son received excellent care there from paediatric dentists who were trained to deal with children with special needs. But when Graeme turned 17, he was referred to Vancouver General Hospital for his dental care instead. It would mark the start of a struggle in which Rush felt she was pitted against a system that simply was not set up to serve her son.
Shortly after the referral to adult care, Rush was told Graeme would need to go on a waiting list of at least two years to complete dental surgery that had been recommended by BC Children’s Hospital. Like many adults with serious developmental disabilities, Graeme requires general anaesthesia for even routine treatments due to complexities associated with his disability. There is no specialized dental clinic with general anaesthesia capability at VGH, and patients like Graeme are typically referred to the UBC Hospital for dental surgery. Since there is no clinic dedicated to special needs dental care there (or anywhere in BC), Rush says there is inevitably a long wait for Operating Room time. Meanwhile, serious dental problems were developing under Graeme’s gum line, undetected.
By 2006, he had started to beat his own face, especially the area around his right ear. “We went to many specialists,” says Rush. “He had started having progressively more severe seizures. His neurologist thought he had been tipped into the seizures from the pain. Graeme’s GP was eventually prescribing pure codeine to deal with the pain.” Graeme’s parents always suspected the head-hitting was caused by dental pain, but Rush says Graeme’s VGH dentist at the time insisted there was no link and kept him on the waiting list. Even after mental health specialists ruled out psychosis as a basis for the head-hitting, concluding it probably related to dental pain, Graeme’s dentist was reluctant to accept this analysis and allow him to access immediate care. When Rush later transferred him to another VGH dentist, she met with similar resistance.
“I couldn’t believe what I was hearing, and my kid was killing himself!” says Rush. Although there are private general anaesthesia clinics in BC, Graeme was having too many seizures at the time to meet their criteria for treatment. Thinking she had run out of options, Rush threatened to sue and Graeme was admitted to UBC Hospital for surgery in early 2008. Under his gum line, the dentist found two severely infected teeth and several large cavities that she had previously failed to diagnose. He ended up having five root canals completed by an endodontist during 2008 and 2009. His right ear is permanently deformed as a result of him beating his head.
Rush is prepared to accept that Graeme’s case is an anomaly. Had proper X-rays been taken, routine in most dental offices, the tooth decay would not have gone undetected and he may have been admitted for surgery sooner. But she also believes the failure to provide adequate care was down to a lack of special needs dentistry training within the profession. Unlike countries such as Australia and the UK, Canada does not recognize a specialization in special needs dentistry. In addition, there is only one program (in Toronto) offering a specialization in dental anaesthesia, and Rush says more such programs would allow more patients to be treated in the community, freeing up precious hospital Operating Room time for more complex cases. Rush acknowledges that the Canadian undergraduate dental curriculum is already packed, and it’s difficult for instructors, who themselves never received such training, to include it in the agenda. It would also cost a lot of money to establish and there are many other important needs to address. “On the other hand,” she says, “they do find time to teach about cosmetic dental procedures and some other types of treatment that are extraordinarily expensive and financially out of reach for the average Canadian.”
The shortage of professionals with specialized training became more apparent when, over the period from 2009 to 2013, VGH could not locate a prosthodontist who could fit Graeme with crowns under general anaesthetic. Without crowns after the root canals, there was a danger some of Graeme’s teeth would crumble. He had started hitting his face again – enough to black his eye. Rush found a third VGH dentist who was prepared to at least repair the teeth. Again, they faced difficulty getting Operating Room time and again Rush threatened to sue. During surgery, the dentist discovered a tooth on the lower right that was too damaged to save and had to be extracted, as well as an infection in the jawbone that Rush suspects was caused by the delay accessing care.
This dentist supported Rush as she campaigned to find a specialist able to fit her son with crowns. Otherwise, he said, Graeme was likely to lose more teeth. They found a recent UBC prosthodontics grad who had previously treated adults with developmental disabilities under general anaesthesia in Alberta. He was excellent, says Rush, but after he placed the first two crowns during 2014, he could not secure more time in the Operating Room to finish the recommended treatment plan and resigned his hospital privileges in frustration. Rush was distraught, but because Graeme’s seizures were now well under control, they were able to get him into a private general anaesthesia clinic. The same prosthodontist treated him there instead – at a cost of thousands of dollars. The last two of eight gold crowns were cemented into place this May.
Not every adult with developmental disabilities can count on such a capable advocate, nor has parents in a position to pay for private treatment. In fact, says Rush, there is a high correlation between developmental disability and poverty – and this applies to the disabled individuals’ families as well as themselves. Couple this with a provincial dental plan for adults with disabilities that pays approximately 60 per cent of the treatment fees recommended by the BC Dental Association, and you have a situation where there is little financial incentive for dentists to treat this patient group. “According to the executive director of the BC Dental Association, in many cases the coverage is less than 60 per cent,” says Rush. “But dentists’ average overhead is 60, so if they take a patient with a disability who can be treated in a community dental office – fairly high functioning adults with a developmental disability – they are actually doing it at a loss. Typically those adults take more time, and there’s no extra fee allowed under the provincial plan.”
It had become clear to Rush that there was a gaping hole in terms of care provision, so she decided to advocate on behalf of the whole developmentally disabled adult community. “In breach of their human rights, I think, people are denied treatment that can be described as nothing other than critically needed healthcare – except that our weird healthcare system separates out dentistry,” says Rush, pointing out suspected links between oral infection and serious physical ailments, such as diabetes and heart disease. “I assumed that if I raised this issue, they would fix it. What an idiot I was. More or less, everyone ignored me and said it may be a problem but there isn’t any money and there’s nothing we can do. There’s no help we can give. I could not believe that we could be so callous towards a group of people who have no ability to assist themselves otherwise. If they can’t be treated except under general anaesthesia, and you haven’t provided a general anaesthesia facility, and you haven’t provided enough coverage to get them treated, they’re going to lose a lot of teeth and suffer a lot of pain. We are truly mistreating this group and there must be an obligation here.”
Her preliminary analysis of current health law indicted to Rush that there was indeed a legal obligation. She applied to the Law Foundation of BC for funding to research and produce a report with recommendations for the provincial government. UBC law students provided assistance with legal and historical research. A UBC library science student confirmed the report’s citations and references.
Published in 2013, the report draws attention to the issue and calls for adequate coverage, training, and the establishment in BC of a clinic dedicated to treating adults with developmental disabilities. Until the situation changes, Rush will keep campaigning. That’s why she added details about her initiative – Help! Teeth Hurt – to alumni UBC’s your evolution website. She never expected to win the competition, yet her submission rapidly attracted 1,000 votes to take the prize.
She thinks others identified with her situation. “You have no idea how many emails I got from people asking if I can help them to get their son or daughter with a developmental disability access to dental care. It’s been very revealing to me just how people struggle. People phone me in tears. I know how they feel. There’s no question the disability community is very united in believing this is critically needed.”
But Rush thinks it’s the photo of Graeme featured on the your evolution website that helped her nail it. “It’s a very engaging photo – it focuses on his smile.” And how is Graeme these days? “He hasn’t hit his face again since the last of his treatments were completed,” says Rush. “He is as happy as a lark. The difference in his life between good dental care and lack of access to dental care is 180 degrees.”