When Graeme Rush is happy, he jumps up and down.
When he is unhappy or in pain, he sometimes hurts himself, biting his arms or banging his head with his fists.
Mr. Rush, now 26, was diagnosed with autism at the age of three. He does not speak or write. For months beginning in 2006, he banged his head so hard and so often that he permanently damaged one ear. His parents, suspecting his behaviour might have something to do with his teeth, sought dental treatment.
It would not be routine. Mr. Rush will let caregivers brush and floss his teeth, but he cannot sit still for a needle, drill or sometimes even an x-ray. For him, anything beyond the most routine dental work typically requires general anesthetic in a hospital operating room. For several reasons – including a botched x-ray in 2006 and uncertainty over whether Mr. Rush's behaviour indicated a problem with his teeth or other medical concerns – it was more than a year before he was sedated for a full checkup.
By that time, in early 2008, he had more than a dozen cavities and five teeth that were infected enough to require immediate root canals.
For his mother, Joan Rush, the ordeal came to highlight an overriding problem: limited access to dental care for people like her son. As a child, Mr. Rush received dental care through provincial services for children under 18. As an adult, he slipped into a grey zone where adults with conditions including Down syndrome, cerebral palsy or autism can wait months or even years for dental care.
"Graeme had always been in the loop for special needs [children]," Ms. Rush said. "I never realized what a cliff everybody falls off once they hit the adult world."
A lawyer who had long specialized in health and advocacy concerns, Ms. Rush decided to take a closer look at the problem.
The result was a report, released earlier this year, called "Help! Teeth Hurt: Government's Obligation to Provide Timely Access to Dental Treatment to B.C. Adults Who Have Developmental Disabilities: A Legal Analysis."
The first three words of the title refer to Carly Fleischmann, a Toronto woman who is autistic and non-verbal and is reported to have typed this message when she learned to communicate using a computer at age 10.
Ms. Rush finds it telling that the girl's first phrase was a plea for relief from aching teeth.
Ms. Rush bases her legal argument, in part, on a 2012 Supreme Court of Canada decision that found the North Vancouver School District discriminated against a child with dyslexia when it cut special education programs to save money.
That case is one of several she cites to back her argument that the federal and provincial governments are violating the Canadian Charter of Rights and the B.C. Human Rights Code by failing to ensure timely access to treatment and that dentists do not turn away disabled patients for financial or other reasons.
In B.C., adults with disabilities are covered by a dental plan that pays only 60 per cent of the fees set out in the B.C. Dental Association fee guide. So dentists have little financial incentive to treat them.
Even if a dentist is willing, and has sufficient expertise to treat disabled adults, there can be other barriers, including limited access to hospital operating rooms.
It is difficult to determine the scope of the problem. The province does not specifically track waiting lists for dental care for disabled adults. Ms. Rush said waits of up to two years are common. The number of disabled adults in B.C. is growing, and with it, the demand for services. The caseload of Community Living B.C., a Crown corporation that funds and co-ordinates services for disabled adults, has increased by about five per cent a year over the past five years. That trend is expected to continue. Each year, about 500 to 600 young people turn 19 and become eligible for CLBC services.
The agency, which had a budget of $745-million this year to serve about 15,000 adults, came under fire in 2010 and 2011, when dozens of group homes were closed as part of a "service redesign." In the public outcry that followed, Liberal Premier Christy Clark fired the minister in charge and announced a review. That report, released in January, 2012, included 12 recommendations, none of which mentioned dental care.
Other provinces face similar problems, but Ms. Rush says some – including Ontario, Alberta and Quebec – provide more comprehensive dental coverage than B.C. She would like to see a standard level of care across the country.
Her report makes six recommendations, including building specialized dental clinics and urging the College of Dental Surgeons of B.C. to work with other colleges to develop a specialty in disabled adults.
The college is discussing access to dental care for disabled adults with relevant agencies and does not wish to engage in a "public debate" about a complex issue, spokeswoman Anita Wilks said in an email.
"We can say that the real issue identified in [Ms. Rush's] report is a lack of resources to deal with complex medical/dental cases such as those presented by adults with developmental disabilities," Ms. Wilks said. "The problem is not about the qualifications of dentists; rather, that the resources and facilities required are scarce."
B.C. has promised a white paper on how to improve the lives of people with disabilities.
Social Development minister Don McRae, whose ministry is responsible for CLBC, declined an interview.
But in an emailed statement, the minister said all ideas brought forward during consultation for the white paper would be given "serious consideration."
People with special needs – along with seniors, children, low-income and aboriginal people – are among those who tend to have limited access to dental care, said Peter Doig, president of the Canadian Dental Association.
"One of the problems is that it comes down to an issue of funding," Dr. Doig said. "Oral health care has never been made a priority."
Recognizing such gaps in care, the CDA is pushing for a national oral health strategy.
Ms. Rush, meanwhile, retired from her full-time job as a lawyer in March and now lobbies for dental carewith a steady stream of letters and phone calls to government, university and health-care officials.
Graeme, whose teeth are brushed and flossed at least twice a day, has been waiting for more than a year for treatment under general anesthesia for additional restoration work.